Interview with Jolene Philo: A Different Dream for My Child

As a new blogger, I quickly discovered Jolene Philo's, Different Dream during my search for other parent bloggers of children with disabilities.  Different Dream soon became a reliable and sensible resource for my own special needs life.  I have been honored by being permitted an early look at A Different Dream for My Child.  

Picking up the book, I  was pleased to find the same balance and care I know from her blog which would comfort and counsel any special needs parent through their new reality of life.  The guide is designed to help parents newly parenting a special needs child to stay on the path and become strong advocates for their child and family.  

I thank Ms. Philo for allowing me the opportunity to address questions to her prior to the book launch.  Thank you so much for your time and inspiration!

1.   Serious childhood illness and the needs of parents makes people feel uncomfortable. How do you find the strength to reach beyond your own experiences to help the special needs community?

Jolene: My strength comes from the compassion inherent in shared experience. The memory of the isolation my husband I experienced while parenting our son with special needs compels me to reach out. Our son is now well and whole. I’ve been blessed with resources, ability, and training to reach out to others. So I do it.

2.   In the initial aftermath of the birth of a special needs child, new parents are unlikely to have the time and energy to pick up your guide prior to the first decisions they must make... if you were to make a list of the most important lessons you would like them to know in their first days would you please share them here?

Jolene: You’re absolutely right. Most parents don’t have access to Different Dream Parenting or any other book immediately after diagnosis. I advise parents facing unexpected, immediate decisions to pray together, then assess the options, choose as best they can under the circumstances, and trust God to deal with the rest. Once the immediate decisions are taken care of, parents should contact their insurance company, if the situation warrants that, to update them. After that, parents must tap into an emotional and spiritual support system. They can start a CaringBridge page to update others and receive encouraging notes. They might contact a pastor. Of course, I’d love to have them visit DifferentDream.com for resources and support, too.

3.   When a child has serious illness or condition, the focus is on the child, but the family as a whole  needs support, too.  My own family now receives services through a local hospice program for children with life altering illness and their families.  Have you found similar programs available throughout the country and if so are there any that come to mind as exceptional?

Jolene: While doing the research for Different Dream Parenting, I interviewed the coordinator of the Pain and Palliative Care department at Children’s Hospitals of Minnesota, Stacy Remke. (Most children’s hospitals now substitute “pain and palliative care” for “hospice” because many children now live many years with conditions once considered terminal.) Their program is the model for programs around the country. Most large university and children’s hospitals should have a hospice, pain and palliative care, grief, or bereavement department. I suggest parents find the one closest to them geographically and tap into it.

4.   The outward changes in the lives of parents of very sick children are visible. But what internal changes do the parents experience? How does it affect them spiritually and emotionally?

Jolene: Let’s talk about the spiritual effects first. Obviously, these parents are going to question God about why he allows innocent children to get sick, suffer, and even die. Their faith will be shaken. Either they will resolve those questions and draw closer to God, or they will lose faith and turn away from him. It’s impossible to address those questions here, but they are dealt with Different Dream Parenting.

Emotionally, many parents of kids with special needs wrestle with grief and guilt. These are perfectly normal emotions for their circumstances, but they don’t realize that. Again, those issues are discussed in detail in Different Dream Parenting.

5.   If it’s hard to approach the parents of a seriously ill child, it’s doubly difficult to know what to say to parents who have lost a child. How do we approach them? What should and shouldn’t we say and do?

Jolene: The most important thing you can do is to use the child’s name. Many people shy away from saying the child’s name because they think it will hurt the parents. But parents who have lost children tell me they love to hear their child’s name. Doing so is a reminder that their child lived a life that mattered.

Don’t say “I know how you feel” unless you’ve lost a child and do know how they feel. Other than that, just ask them if they want to talk and follow their lead. Send cards on the child’s birthday, the anniversary of the diagnosis, the anniversary of the death, on Mother’s and Father’s Day. Send cards for years and years and years. Finally, just be a friend. Spend time with them. Go places. Have fun. Let them cry. Let them laugh.

6.   Professionals who come into our lives for our children are educate us to be the best parent we can to help our child.  You mention that as parents of special needs children we educate the professionals as well.  Do you have any advice for parents struggling to communicate their needs and desires for their child's future?

Jolene: I suggest parents write down their hopes and goals for their children’s futures and share them. As soon as or if kids can verbalize their own hopes and goals, write them down and share them, too. Also, make a portfolio for your child. Include items your child has created and even video of your child playing or interacting at home. That can give educators a different view of your child. (As a former teacher, I know kids behave differently at home and school.)

7.   It is often difficult for the rest of the family - siblings, grandparents, aunts, uncles, and cousins to understand what the special needs family is experiencing.  How do parents educate these family members and perhaps friends to be the support system they need?

Jolene: Different Dream Parenting has an entire chapter on the subject. It’s hard to condense it into a paragraph! Siblings need alone time with parents, especially if the special needs sibling requires a great deal of care. The best resource around is SibShops, founded by Don Meyer. (www.siblingsupport.org) Here are a few tips for educating extended family members:

·         email frequent  updates

·         refer them to websites about the child’s condition

·         ask them to go to doctor’s appointments or therapy sessions with you

arrange for some adult-only time with them now and then

11. Please share some of your own spiritual journey.  You have a very strong faith base; when your own child suffered a traumatic birth did you have the relationship to God you needed at the time?  If not, please tell me more about the process of your relationship?

Jolene: My husband and I were 25 when our son was born and had been Christians for many years. But we lived in a very remote area with very little spiritual support. My husband handled everything much better than I did. For several months, I was very anxious and angry. One day I was so tired and frustrated, I threw a plastic glass on the kitchen floor and it shattered. At that moment, God whispered, “What are you so afraid of Jolene?” When I realized my fear was that my baby would die and God assured me that if that happened, my baby would immediately be in heaven with him, my anxiety was gone. There was nothing to fear.

Another pivotal moment came many years later when our son went through a period of separation from us. (He was suffering from undiagnosed post-traumatic stress disorder which has since been successfully treated.) God made it very clear that he understood exactly how both my son and I felt. When Christ was on the cross, God the Father and God the Son were separated from one another. A God who loved me enough to come to earth and experience what I would one day experience is a God I can trust and follow. Since then Romans 8:32 has been a verse that brings both hope and comfort to me:

For He who did not spare His own Son, but delivered Him up for us all, how will He not with Him freely give us all things? My hope is that other parents will also find hope and comfort in the God who understands exactly how they and their child feels.


Thank you Jolene for sharing with us!
Your dedication to these families is inspirational.
Stacie

Different Dream Parenting is available at 10% off the retail price:

http://www.dhp.org/Products/UB913.aspx.