The cover of Different Dream Parenting has, “A Practical Guide to Raising a Child with Special Needs” and I can assure you Jolene Philo accomplished just that! Jolene has published numerous articles on parenting a special needs child and preparing children for a hospital stay. She is also the author of A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children. We are so pleased she agreed to participate in our Author Interview Series.
Lorna: Congratulations on your fine parenting book, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs. I read you have been a teacher for more than twenty-five years and that you have a special needs child. Tell us more about yourself and how your work and life experiences culminated into two published books.
Jolene Philo >> I graduated from college with an elementary education major and a learning disabilities minor in 1978. During the next 25 years I taught troubled boys at a treatment facility, country school, talented and gifted education, and finally third and fourth grade. Because I enjoyed working with kids who have special needs, many of them were placed in my classroom.
Our son was born in 1982 with a life-threatening birth defect that required surgery shortly after birth. That surgery was successful, and after a 2 1/2 week stay in intensive care, he came home. However at two months, complications arose that led to another surgery. To make a long story short, our son had 7 surgeries by age 5 and hundreds of appointments, tests, and procedures and a final surgery at age 15. He had no other physical or cognitive issues and did well in school. As an adolescent he developed behavior issues that culminated in successful treatment for post-traumatic stress disorder (PTSD) at age 26. He is now married, has a good job, and is doing well.
Throughout our son’s medical struggles, I searched for books to answer my questions about why God allowed a child to suffer so. I also looked for books with practical advice for parents of kids with special needs and could find neither. Finally, the opportunity arose for me to write those books, and I jumped at it.
Lorna: In my review of your book, I wrote,” Yes, all parents of a child with special needs can benefit from Different Dream Parenting!” You did a great job of balancing practical and Christian-based advice, your experience and other parents’ stories. What are the comments about your book that have made the writing effort all worthwhile?
Jolene Philo >> Parents are so grateful to know they are not alone. They also appreciate the very practical nature of the book – the step-by-step instructions and having a place to start. Most surprising have been the comments on the prayer guides in the back of the book. Those really strike a chord with parents.
Lorna: Finding the right professionals to work with your child/family is difficult for many parents. What are some questions that parents should ask the professionals to make sure they are a good match for their child?
Jolene Philo >> First check their credentials and training. If they’re not licensed in their field, find someone else. My suggestion would be to take your child to meet the professional and watch their interactions. If the professional engages the child and interacts with skill and compassion, you’ve got a keeper. If the professional talks to you and not the child, look elsewhere.
Lorna: What and how much should a child be told about the diagnosis? How much should parents share with friends and families?
Jolene Philo >> What you tell depends very much on a child’s age or maturity. Preschoolers should be told only what is important for today or tomorrow because they can’t comprehend more than that. Early elementary children can be told what matters a week ahead, older elementary children a little more. Adolescents and teens should be treated like adults and be present when the doctor gives the diagnosis. Older children should also be consulted about how to share the information with friends and families. For more information, a post I wrote for specialneeds.com will be helpful. It can be found here.
Lorna: Yours was the first book that I have reviewed that dealt with the death of a child. Your section, “Losing a Child—From Lost to Comfort”, is very well presented in four, well written chapters. You do a great job on this difficult topic touching on how to tell the child and siblings, planning the funeral with the child, how to deal with grief, and how to find hope in the midst of grief. Tell our readers where parents can find support and resources in the death of a child.
Jolene Philo >> Unfortunately, because this topic is so difficult to face, not many resources exist either in print or on the internet. That said, the Compassionate Friends organization has parent support groups around the country. The Dougy Center, The National Center for Grieving Children & Families, is another excellent resource for grieving parents and siblings. At the risk of appearing blatantly self-promotional, I’ll point readers to my book Different Dream Parenting. The four chapters dealing with the death of children end with comprehensive resource lists too extensive to include here.
Lorna: Often I read about how difficult it is for parents to deal with insurance companies. What are your tips to cut through the red tape and get positive results with your insurance provider?
Jolene Philo >> Being proactive and organized is the key. When calling the insurance company, have a notebook handy and log all calls. Record the date, the time, the name of the person you speak with, the phone number and extension. Write down what is said. If you aren’t satisfied, ask to speak to the manager in a calm, firm tone. Insist if necessary, and don’t hang up until you get to speak to the correct person. If you reach an impasse, politely and firmly inform the insurance company that you will contact your state’s insurance commission. (Google the name of your state and the words “insurance commission” to locate yours.) If necessary, do so. The commission was created for these kinds of situations and often the mention of them will get results.
Lorna: You wrote, “If you and your spouse are struggling, seek professional counseling. Call your hospital, mental health clinic, or church for recommendations… Do all you can to give your kids the gift of a strong marriage.” So many things require your time and attention that often parents do not realize what is happening to their marriage. What are the stresses on marriage for the parents of a special needs child? What can they do to counter that?
Jolene Philo >> Parenting is stressful. Parenting a child with special needs is exponentially more stressful because those kids need more time, energy, resources, and creativity than do typical kids. Pretty soon, spouses have no time to communicate or spend time with one another. Parents of kids with special needs must be very intentional about carving out time for one another. They also need to educate others about how to care for their child with special needs and their typical kids so they can get away now and then. It’s so easy to buy into the lie that no one else can care for our kids as well as we can. But if we educate extended family members, trusted friends, or in-home care providers, they can fill in now and then. Parents should also take advantage of respite services offered by care facilities or churches. They can also swap care with other families to get some time away.
Lorna: Thank you very much for adding another interview to our Special Needs Book Review site. Please tell us what Jolene Philo has on her To-Do list for the coming months. Give us your links to follow you and where to buy your books.
Jolene Philo >> I’m working on a couple different books. One is about PTSD in kids. Another is simple techniques Sunday school teachers can use to include students with special needs in their classes. I’m also working on a family history project and would love to try mystery fiction someday. Monday through Friday, I blog about special needs at www.DifferentDream.com and about daily life at www.jolenephilo.com. I also speak about special needs around the country. More information about speaking topics can be found here.
To purchase my books, visit here where readers can click on links to purchase print versions of both A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children and Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs or the electronic version of Different Dream Parenting.
Thanks for inviting me to participate in your author interview series, Lorna. I enjoyed being with you!