One of the hardest things for me to describe about my experiences as the mom of a child with some special needs is how lonely it sometimes feels. It's weird for me to say this because I have wonderful family and friend support. There is a plethora of people available to hear me and help me, should I need them. But I find it difficult to always adequately express what is bothering me about my 5-year-old daughter, diagnosed with Noonan Syndrome at 15-months old. Though I am a writer, there are just some worries I can't put into words. Often, there's no concrete reason for my concern... it's just a feeling I have. And let me tell you, for moms, and especially those of children with issues, feelings are our inner Garmin.
Have you ever heard the principle of Aristotle that is taught in law school?
Absence of evidence is not evidence of absence. That one theory best encompasses my experience as the mom of a child with special needs. So much of what I experience with her isn't tangible. It can't be seen. Often it can't be put into words. But still, I know it's there. And often, that's why I feel alone. Because how do you share something you can't even put into words. How do you share the shadow of a feeling?
I think that's what I appreciate most about the
Different Dream books, and in particular,
Different Dream Parenting. From the first page I felt understood by people I'd never met who are in situations completely different from mine. They know what it's like to chase a feeling and feel like you're chasing your tail. They know what it means to know your child so well, to be so connected to your child, that with just one look you
know something is wrong... even if there are no obvious signs. It's vindicating, I tell you.
I appreciate greatly how this book takes the words of parents and follows it up with supporting scripture, and advice from physicians and experts. Prior to reading this book, it never occurred to me that children who've gone through medical trauma could suffer from post traumatic stress disorder (PTSD). But it makes so much sense. Reading that in the book was a head-slapping moment for me. Duh! Of course something like medical trauma could result in PTSD for a child. Why didn't I think of that? Probably because my head is a constant jumble of other worries and concerns. And even though I don't believe my child suffers from PTSD, that section of the book really helped explain to me why my daughter freaks out when anyone in scrubs comes her way. Or why she won't look her doctors in the eye and stares at the ground and hangs on to me for dear life when they're around. It explains why they have to strap her down at the dentist. I can't tell you how awful it feels to hear your child screaming as you sit in the waiting room. And then to see your child emerge from a simple dental procedure, with her face swollen and red, and her body marked from the straps that held her down, is, in a word, horrible. Sometimes I think
I may have PTSD from having been the sole witness to such situations over the past five years. Though I don't believe my daughter actually remembers all the poking and prodding and testing and hospitalizations that came prior to her diagnosis, I do believe she
knows it happened. It stuck with her. And knowing such behavior isn't uncommon for kids in her situation is comforting to me.
Different Dream Parenting is chapter after chapter of such realizations for me. Lots of "ah-ha!" moments. Most of all, the book puts all these things in perspective. Yes, our experiences are ours and they're all relative, but it's so calming and even vindicating to know there are others who feel how I feel... and know what I know:
From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked. (Luke 12:48).
I am up to the challenge.
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Q&A with Jolene Philo, author of Different Dream Parenting.
Recently, I had the opportunity to ask Jolene Philo, author of Different Dream Parenting, some questions. She was very gracious and much more timely in answering the questions than I have been in posting them! Thanks for playing along Jolene!
AB: What would be your number 1 piece of advice for any parent go through a medical situation with their child, whether it be a chronic condition, syndrome, cancer, etc.?
JP: I would advise them to step back and keep things in perspective. The situation you are in may not what you expected, but just because it's different doesn't mean it is inherently wrong or bad. It is different and will require an adjustment period, a great deal of education, and learning to advocate, but it can be good. You can and will adjust to the different dream of your child's life. It is the life your child has been given and the life your child knows. Your attitude will greatly influence your child's perception of that life. If your attitude is one of thankfulness, hope, and peace, your child's will be much more like that too. If you're having trouble maintaining a good attitude, look for parents of kids with special needs who have hope and perseverance. Create a support network to encourage and embrace you. No way should you be Lone Ranger parents!
AB: I loved the first book, and I felt myself identifying with so many situations. Parents who had gone through ordeals that were nothing like mine said things that I could really identify with. Were you surprised by all the common threads coming together from such vastly varying situations?
JP: I was surprised during the interviews for the first book to hear so many parents voice the same emotions and lessons learns, totally independent of one another. I began looking for those themes, comparing them to our family's experience, and chose to use them as the topics of the devotions in A Different Dream for My Child.
AB: In the second book, I appreciated how you took it to the next level with resources. Almost a how-to guide. Having a special needs child yourself, you probably learned a lot of these lessons along the way. Did you learn anything new from writing the book?
JP: I learned so much while researching and writing this book. Our son was born in 1982 when few support systems existed for parents like us. Over the years so much has changed, I had to research everything from the ground up. During the research I discovered my unresolved feelings of guilt and grief. Writing this book was great therapy for me as the parents interviewed helped me process those feelings. God also guided me to some wonderful resources and Bible study that became the foundation of many of the chapters addressing faith issues. My personal experience growing up with a dad disabled by multiple sclerosis and then later with our son taught me how God works through suffering to make his children stronger and more compassionate. Those experiences provided the lessons of hope, encouragement, and joy in Different Dream Parenting. But almost everything else was new learning.
AB: The early years with a special needs child can be so traumatic. And sometimes, depending on the illness, that trauma never ends. What is your life like now that your child is grown? Any advice for new parents who might feel overwhelmed?
JP: Our son's story is one of healing of the body and mind, restoration of relationships, and hope. He is healthy, highly capable, just accepted a new job, is happily married, and would like my husband and I to live near them when we retire. Sometimes I pinch myself and think this can't be real after his many years of physical struggle and mental struggles with PTSD. On the other hand, my father lived 38 years with MS. He died after spending the last 14 years of his life in a nursing home as both the youngest resident and the one who'd lived there the longest. So I have seen those I love most experience both complete restoration and complete lack of healing. And in both cases, I can say God was faithful. And I can say my father lived a life as dignified and meaningful as the life my son is now living. From them I learned the value of every life and that God is trustworthy in every situation. So my advice for overwhelmed parents is just that. You are overwhelmed, but God is not. When your situation overwhelms you, focus on who God is rather than what's happening to you. Look up!
AB: I think it's important for parents to remember to take care of themselves. I'm a better parent when I find time to make myself a priority--even if just for a little bit. What do/did you do to take care of you? What do you suggest for other parents?
JP: You're absolutely right, April. Parents must make time for themselves, but doing so requires them to release some of the control of caring for your child. It's very easy to get into a mindset of "Only I can do this. No one else can do it right. I have to be here all the time." It may be true that no one can do it better than you, but what if something happens to you? What happens to your child then? For your good and your child, other people must be trained as care givers. Then you can get away now and then. Your child will get more socialization. You will come back better able to do a fantastic job of parenting. So take advantage of any home health care your child qualifies to receive. Allow your child to attend respite events if they're provided by your church or community. Train family members (grandparents, aunts, uncles, cousins) as care givers. Take advantage of the time to go for a walk, go to the coffee shop, attend a Bible study or do whatever will refresh and re-energize you.
AB: What's next? Any more books in the works?
JP: I'll be spending the next few months ramping up my internet presence. Since I'm not very techie, that is a huge challenge. (If there's anyone out there who can help, please email me.) But parents of kids with special needs are members of the online generation, so it's a great place to reach out to them. And since their care giving responsibilities keep them close to home, it make sense.
I add resources and information about special needs to www.DifferentDream.com daily, so stop by for a visit. And yes, more books are in the works. I'll be writing several proposals for my agent to submit to publishers. One is about post-traumatic stress disorder in kids. Another has to do with special needs ministry in churches. Several devotional book proposals are also on the docket. And I'm dying to work on a fun mystery novel series with no special needs connection whatsoever. Just like parents of kids with special needs, the authors who write about special needs require a break from the subject now and then, too!
