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:
