Tag Archives: special needs families

Special Needs Parenting Introduction

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 Special Needs Parenting Cover

Today I am sharing with my readers an excerpt from the introduction of my book, Special Needs Parenting: From Coping to Thriving.

I have hit the bottom of the tank today. We had our annual review at the school, and it’s so hard to hear in concrete terms how delayed my son is. I know it. None of this information is new, but it’s so hard to hear again. I worry about his future, let alone how we will afford all of his therapies today. Every single day there is so much to do that I feel I can barely keep up. The needs are unending, and I am not nearly enough.

—Blog Post, Anonymous

 Have you ever been that parent? I have. My experience isn’t exactly the same as my friend’s recent blog post, but it resonates in many ways. Challenging behaviors at school? Yes! Worry about my son’s future? Yes! Endlessly running around to therapy appointments? Yes! A sense at times of being overwhelmed in day-to-day parenting? Yes! A view of the future shaded by anxiety? Yes!

Our journeys as special needs parents are as varied as the differences among our children. Each child is unique and precious in the sight of God, and there is no other exactly like our own. Yet there are common challenges and common experiences shared among us as special needs parents. As clergy, I have led a variety of parenting support groups for more than five years and it never ceases to amaze me that, regardless of how varied the diagnoses within each family, there are common cords that bind us together emotionally and spiritually. Throughout the years I have seen healing of deeply held emotional and spiritual wounds through coming together in a supportive, welcoming Christian community and working through our challenges together.

My journey toward writing Special Needs Parenting: From Coping to Thriving began years ago when members in my congregation asked me to lead a Bible study for special needs parents. I looked for a resource I could grab off a bookstore shelf that would address the emotional and spiritual concerns of the special needs parents and had limited success. I was in the midst my studies in a doctoral program at the time and I realized that I had found an area of tremendous need for resources within the church. This epiphany changed not only my academic focus, but the trajectory of my ministry.

Through my personal journey as a special needs mom, my experiences as clergy walking with families with special needs, and academic research into how best to build family resilience, I developed a seven-week study. Each chapter addresses a common challenge and offers a positive perspective grounded in scripture and practical tools that can be revisited again and again.

  • God and Special Needs
  • Understanding Chronic Grief
  • Breaking Free from Guilt
  • Tools to Increase Patience
  • Self-care for Caregivers
  • Building Healthy Relationships
  • Hope and Healing

Whether parents read Special Needs Parenting: From Coping to Thriving as part of a small group study or read it individually, I pray this book provides both insights into a loving God and practical tools for the journey ahead. Encouraging special needs parents is at the heart of my calling in ministry, and I hope that the book will be a blessing.

Next week I will share a passage from chapter six, Building Healthy Relationships.

Special Needs Parenting: From Coping to Thriving is available at Huff Publishing and Amazon.

Blessings,

Lorna

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Wandering Through the Woods

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Weston Woods Watermarked

He said to them, “Come away to a deserted place all by yourselves and rest a while.  (MarK 6:31 NRS)

This past weekend I had the opportunity to lead a retreat in the country.  We were a small gathering, but every person arrived with a sense of needing respite and renewal. Each left refreshed, armed with new tools of self-discovery and a sense of community.

The first day, with dry weather and an open afternoon, allowed time for exploration of walking paths on gently rolling hills past ponds and hay fields.  I came across a little worn path, Weston Woods.  My curiosity got the best of me as I stopped off the main, well-groomed trail and began meandering through the woods. Up and down I went, past creeks and the remains of bonfires of the past. The other paths were recognizable, carefully explained to me by my host.  But this path was unfamiliar and rugged. The solitude embraced me, my mind wondering all the while, “Why am I on this path? Should I be here? What lies ahead?”

The tracks of the deer put me at ease. The lasting impressions of their sturdy hooves in the soft soil told me I was heading someplace familiar to many, if not to me. The trees were so thick that I couldn’t see very far down the path where I was headed, but I trusted the ones who had gone there before to guide me. The reward for my patience revealed itself in an open meadow with one spectacular and ancient oak holding court in the center. How wonderful are the works of your hand, O God! Such beauty tucked away as a jewel awaiting discovery. The peaceful shade under its wide branches echoed to me Christ’s words, “Come away to a deserted place all by yourself and rest a while.”

My journey as a special needs parent reminds me of my time in the woods.  It was a world I entered by stepping off the familiar path of parenthood that I had expected, that one reserved for “typical parents” and for which I had carefully prepared.  I found myself wondering, “Why am I on this path? Should I be here? What lies ahead?” Even as I felt a little lost, I trusted the trailblazers who had gone before, following along in their footsteps. Moments of loneliness and shadow giving way to beauty and joy, discovering anew God’s promise that all of creation is beautifully and wonderfully made. My role is to trust and follow and allow the journey to unfold.

Guiding God, Thank you for leading when we cannot see the way. Thank you for renewal when we feel tired. Thank you for surprising us with beauty in unexpected places.  Amen

Focus on Marriage, Part 4: Staying Connected

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Golden Wedding Ring by Danilo Rizzuti courtesy of FreeDigitalphotos

“We are often too exhausted to care.  We co-parent, we just happen to be married.”

 Married with Special Needs Children: A Couples’ Guide to Staying Connected

Raising children with special needs takes a lot of time and attention. The time and attention spent nurturing a child necessarily come from some part of a parent’s life. Typically the time that couples have for each other can be dramatically reduced.  One of the key concerns parents have shared with me time and again is how little quality time they have with their spouse. What time they do have together is often spent in conversation about children. Gradually their relationship shifts further and further from receiving time and attention. In talking with parents they discussed common challenges:

  • Guilt
    • Feeling guilty for leaving your child
    • Feeling guilty for “imposing” on others for help so that you can have time alone with your spouse
    • Feeling guilty for needing a break
  • The need to tag team parent for a child who needs constant supervision
  • Busy schedules
  • Exhaustion
  • Placing all of your child’s needs ahead of your partner’s needs
  • Sleeping arrangements

With so many aspects of special needs life pulling for time and attention it is no wonder it can be a challenge to stay connected. It may take forming an intentional plan to help keep the relationship on track.  What aspects of your relationship with your spouse are most important? How can you move quality time in those areas to the center of attention for both of you?

Suggestions for staying connected:

  • Regularly set aside time to talk and listen.
  • Keep dating weekly or as often as you can, even if it is just meeting for lunch while children are at school. Look into respite programs through local churches or other special needs agencies with trained volunteers and staff who can offer specialized care.
  • Flirt with your spouse. Keep intimacy alive.
  • Evaluate sleeping arrangements. Who sleeps where and why? If sleeping with children in order to monitor their status overnight, technology can be helpful (seizure alert, video monitor, intercom).
  • Change your routine and look for new adventures. There is nothing wrong with “dinner and a movie,” but change it up every now and then. Create a scavenger hunt. Go to a concert. Play tourist in your own town.
  • Plan a surprise. A favorite story from a parent was of a time she came home from work and was surprised that her spouse drawn a hot bath, complete with candle light and spa music.  He told her, “I’ve got the kids and you’ve got 30 minutes until dinner.” Years later she still says it is one of the best gifts she ever received.
  • Check in regularly throughout the day. Even a quick phone call or text message lets your spouse know he or she is on your mind.
  • Show appreciation for even the smallest of tasks. Offer compliments.
  • Exercise together. Walking counts and also provides some alone time for quality conversation.
  • Share hobbies or at least show interest in your spouse’s hobbies. My spouse and I traded our hobbies of running and scuba diving.  Neither of us had the slightest interest at first, and I actually had a hefty dose of fear of drowning and fish with big teeth.  Once we started we found we really enjoyed each other’s activities. My spouse finished his second marathon last weekend and we have several scuba trips on the calendar.
  • Celebrate accomplishments, both big and small.

These are just a few suggestions for staying connected in the midst of parenting. I’d love to hear other ideas you have to share.

The rib that the LORD God had taken from the man he made into a woman and brought her to the man. Then the man said, “This at last is bone of my bones and flesh of my flesh; this one shall be called Woman, for out of Man this one was taken.” Therefore a man leaves his father and his mother and clings to his wife, and they become one flesh. (Genesis 2:22-24 NRS)

Loving God, We thank you for our life partners and the relationships that bless us with nurture and support.  At times the business of life causes us to pay less attention and receive less attention than we want. Help us to find pathways of connection to the ones who love us and know us best. Help us honor you in those relationships. Amen

Lorna Bradley

Golden Wedding Ring by Danilo Rizzuti courtesy of  FreeDigitalphotos

Focus on Marriage, Part 2: Communication 101

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Golden Wedding Ring by Danilo Rizzuti courtesy of FreeDigitalphotos

Communicating within marriage is a key tool for resilient relationships.  What is communicated?  How is the message shared and received?  As clergy, one of the key skills I review with couples in pre-marital counseling are tools for communication. Engaged couples can’t imagine this will ever be a problem.  Yet, we’ve all witnessed at restaurants the quiet couple at the table who seemingly have nothing to say to each other, eating silently and spending more time on their phones than in communication with each other. What happened?

Good communication, as with any skill, takes intentional practice. In busy lives, communication with a spouse can become shorter and more infrequent over time, especially when there are children. It is easy to let good communication skills slip.Some surveys indicate that couples can spend as little as 15 minutes a day in real communication with each other. Here are a few suggestions to help improve the quality and quantity of communication.

Communication 101

 Set aside time to talk. In busy schedules time for important conversations is easily lost.  By important, I don’t mean wills, and trusts, though they are important too.  Rather, what is important in your spouse’s life? What is important to you? What are your long term dreams as a couple? Try to set asaide 30-45 minutes a few times a week to talk.

 Have an attitude of gratitude. Express appreciation when your spouse does something considerate or helpful, like providing a sleep in day, washing dishes, filling the car with gas, and so forth. Simply saying thank you for the way each person fills the everyday roles in the relationship can help build up the marriage.

 Talk about the things that worry you.  Many parents hold on to grief, guilt, and anxiety about the future.  There can be a sense of embarrassment in sharing these feelings inside the marriage. “I wish I could say to my spouse that I am scared about….” Or “I have never said it out loud, but I feel our child has a disability because of me.”  Communication about these secretly held feelings can be very healing, releasing an emotional burden.

 Express your needs or wants clearly. Be specific when communicating with your spouse. Avoid thinking that he or she can read your mind. If you have a need or expectation, remove the guess work and let your spouse know.

 Model Respectful Listening. Avoid multi-tasking, especially when the topic is serious in nature. Reflective listening is also a good tool.  Repeat back in your own words what you hear your partner say.

 Monitor your mood. No one is in a good mood all the time. If in a bad mood, why is that? Hunger, fatigue, illness, time, expectations? Let your spouse know if you are having a bad day and why. It may help avoid an argument.

The rib that the LORD God had taken from the man he made into a woman and brought her to the man. Then the man said, “This at last is bone of my bones and flesh of my flesh; this one shall be called Woman, for out of Man this one was taken.” Therefore a man leaves his father and his mother and clings to his wife, and they become one flesh. (Genesis 2:22-24 NRS)

Loving God, thank you for the gift of words and expression. Help us to use those gifts to build up our relationships. Amen

Lorna Bradley

“Golden Wedding Ring”  by Danilo Rizzuti courtesy of  FreeDigitalphotos.net

 

Need Project Interview

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Need Project Logo

Last week I had the opportunity to talk to Bob West at Need Project, an organization devoted to supporting families with special needs children and adults.  Their mission: healthy families and healthy children through the creation of pracitcal resources and support for parents of special needs children.

Bob heard about my new book, Special Needs Parenting: From Coping to Thriving, coming out March 2015 and interviewed me for thier monthly podcast. Click the link below to hear the full interview:

Need Project Interview

A Bag of Leaves and 13.1 Miles: Piece of Cake!

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1024px-Leaf_rake_and_leaves

“Let us run with perseverance the race that is set before us.” (Hebrews 12:1 NRSV)

Leaves drop late here in Texas and raking under the red oak on my front lawn is a regular Saturday activity for me lately.  Recently my neighbor called to me from across the street as I worked, “Lorna, did you run that half marathon downtown today?”

Rake. Rake. Rake. “Yes.”

“And you are out here raking leaves?”

Rake. Rake. Rake. “Seems like as good a time as any.”

“Aren’t you tired?”

Rake. Rake. Rake. “Kind of, but it needs to be done.”

Shaking his head as he walks away, “I wish I could find that motivation.”

Running 13.1 miles and raking a bag of leaves isn’t hard.  Coping with autism induced emotional meltdowns in public, now that is hard.  Teaching handwriting to a child with dysgraphia, now that is hard. Getting wheelchairs in and out of stores, now that is hard. Facing a long summer without a single playdate or birthday invitation, now that is hard. Enduring the unwelcome stares of strangers, now that is hard.

As parents, of course we get tired.  Yet we find the motivation because it needs to be done.  In comparison, a bag of leaves and 13.1 miles is a piece of cake!

Enduring God, Give us strength when we are tired, motivation when we want to stop, and hope in you in all things. Amen

Photo: By David Goehring (Flickr: Fall Labors) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons

Review: No More Peanut Butter Sandwiches by Jeff Davidson

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No More Peanut Butter Sandwiches

Jeff Davidson, founder of Rising Above Ministries, authored a must read book for fathers of special needs children.  No More Peanut Butter Sandwiches: A Father, A Son with Special Needs, and Their Journey with God chronicles his life as a special needs parent.  Jeff presents a poignant and transparent look into his thoughts and feelings, offering the reader a chance to connect with the roller coaster of emotions and spiritual challenges that often accompany special needs parenting.  As the father of a child with severe physical challenges as well as autism, Jeff’s journey resonates across a variety special needs life circumstances. Each chapter is grounded in his theological understanding of God’s grace and love.

Jeff is passionate about filling the gap of support for special needs dads.  He discusses in an opening chapter the need to reach out and encourage dads in particular due to a trend that he calls “vacant dads.” Having walked the journey as a special needs father, Jeff offers unique insights about how to avoid the pitfalls that make it so tempting to “check out.” His is a positive and encouraging message that in no way sugar-coats the reality of hard days.  His voice of wisdom and experience guide the way on a journey toward acceptance, revealing moments that transcend real time when God steps into everyday life with Jeff and his son.

Jeff has created the No More Vacant Dads Initiative, a positive ministry with a mission to preserve, encourage and equip special needs dads. Still in the start-up phase, there is a long-term vision for coaching and mentoring.  You can learn more about Jeff’s ministry through GoodnightSuperman.com.

About the Author: Jeff Davidson is the founder and President/CEO of Rising Above Ministries, a national special needs ministry serving special needs families. A pastor, speaker, and author, Jeff says he was chosen to be the dad of a son with special needs, and called by God to minister to those in the special needs community. Rising Above was birthed by Jeff, and his wife Becky, based upon their own experiences raising their son with profound special needs.   In addition to his own blog, GoodnightSuperman.com, Jeff also is a contributing author to the blog Not Alone SpecialNeedsParenting.net and he writes atComfortinTheMidstofChaos.com. In addition, Jeff is a team member and special-needs writer at 1Corinthians13Parenting.com. He also serves on the advisory team and blogs at Disability Matters WhyDisabilityMatters.org.

 

I Have A Dream, Too

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Martin_Luther_King_-_March_on_Washington

Then afterward I will pour out my spirit on all flesh; your sons and your daughters shall prophesy, your old men shall dream dreams, and your young men shall see visions.(Joel 2:28 NRS)

Four iconic words ring the air today. They are woven into the fabric of our nation even as they help us celebrate the life, vision and ministry of a man gone too soon.

“I have a dream …”

Standing up for justice and creating social change is hard.  It takes vision and determination. It takes breaking down walls and stereotypes and creating in their place dialogue and relationships. It takes embracing a dream and working diligently with others to make it a reality. It also takes time. Lots of time.

Thinking of Dr. King, he has inspired a nation and set in motion a movement that continues beyond his years.  He alsp left as his legacy a model for change.

Listening to his speech once more makes me realize that I have a dream, too.

I have a dream that all children, on or off the spectrum, with or without a genetic difference, with or without typical body, will have friends. I have a dream that bullying will end and understanding will take its place. I have a dream that child and adult alike will be accommodated for their differences out of a sense of equality and compassion. I have a dream that everyone who wants to be part of a church will find ministries ready to receive them.  I have a dream that no parent will feel alone on the journey with special needs.  I have a dream that all families, whatever their shape and size, will grow in resilience rather than being torn apart by disability. I have a dream that communities full of understanding will offer refuge, hope and healing for the heart and soul.

My dream keeps me up late at night and prompts me out of bed early in the morning. My dream makes “good enough” not an option. My dream leaves me exhausted and stretched too thin at times, but filled with joy and hope as well. My dream connects me with others who share my vision for social change in the area of special needs and work toward it diligently. My dream keeps me grounded in God’s path for me and guides what I do every day.

I will never be the leader Dr. King was, but he inspires me with what is possible. I too have a role to play in making the collective dreams of many families living with disability become reality. We all do.

When you dream of the future, what do you see?  How are you helping that dream come a step closer day by day?

God of our visions, thank you for directing us to better live as your people. Help us to always strive for your justice. Create for us a dream for the world as you would have it and inspire us to follow your vision. Amen.

 

“Martin Luther King – March on Washington” by Unknown? – This media is available in the holdings of the National Archives and Records Administration, cataloged under the ARC Identifier (National Archives Identifier) 542069. Public Domain.

Six Things Special Needs Parents Wish You Knew

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Pencil with Cheklist by cuteimage

“So I say to you, Ask, and it will be given you; search, and you will find; knock, and the door will be opened for you. 10 For everyone who asks receives, and everyone who searches finds, and for everyone who knocks, the door will be opened. (Luke 11:9-10 NRS)

While the special needs world can feel isolating, many times there are people in our lives who want to reach out in a meaningful way but are unsure what to do. At times concerns about causing offense or being intrusive create barriers to understanding.  Bridging the communication gap with special needs families can open the door to supportive resources that improve family and personal resilience. Jesus teaching to ask, seek and knock ring true. Here are a few suggestions that may help improve understanding of the world of a special needs parent:

  1. We can use help from time to time, but may feel uncomfortable asking for it. It doesn’t have to be something big. Even a small gesture like picking up a prescription at the store or meeting a child as they get off the bus can be a big help. If a family has a child with fragile health or impaired mobility, having a list of folks to call on can be a life saver.
  2. We need friends. Special needs parenting can be isolating due to differences. We appreciate it when people make the effort to reach out. It is hard for us to do so because we often receive rejection.
  3. We like to be included. At times our families have a hard time being part of activities due to physical, intellectual or behavioral differences. We may be hesitant to try new things. It’s nice to be invited and then welcomed if we feel brave enough to try something new.
  4. We need to talk. An important part of coping well with stress is being able to share with others. It helps process feelings. It is validating to be heard.
  5. Our “normal” family day may look different than that of other families, but it is neither tragic nor heroic. It is simply different.
  6. We don’t mind answering questions. A great way to build bridges is simply to understand the differences with which we live. Approach the discussion from a positive perspective rather than, “What’s wrong with…?” Perhaps try, “Since your son is non-verbal please teach me how to communicate with him,” or “I would like to have your daughter over for a play day and I understand she sometimes has seizures. Can you teach me what to do if that happens at my home?”

 

Gracious God, help us share our story in a way that others can hear and understand. Amen.

Photo: “Pencil with Checklist” Image courtesy of cuteimage at FreeDigitalPhotos.net

 

 

 

What Gift Can I Bring?

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Nativity lights

“You are such a liturgical nerd.”

Yes, I am! I’ll claim that one.  On New Year’s Day, with the Rose Parade on TV in the background, we “de-Christmased” the indoors. Tree down, mantle back to normal, parade of tin angels paraded back into their box until next year, and so forth. That just left the outdoors.

My husband asked, “When do you want to take down the nativity outside?”

“We can’t until Epiphany, January 6.”

While stores have turned the twelve days of Christmas into day after day of sales leading up to December 25, the twelve days of Christmas actually follow December 25, figuratively representing the amount of time it took the magi to travel to Bethlehem and present their gifts to the Christ child. They were most generous with gold, frankincense, and myrrh.

In the time of King Herod, after Jesus was born in Bethlehem of Judea, wise men from the East came to Jerusalem, asking, “Where is the child who has been born king of the Jews? For we observed his star at its rising, and have come to pay him homage.” (Matthew 2:1-2 NRSV)

The birth of a baby is a great gift giving occasion. Parents are in need of many things, not the least of which is support. Recently I took two meals to friends who are new parents, plus a gift card for a pedi for mom to get away for some self-care when she needs it. These parents do not have extended family here so they are on their own if not for their friends.

Major life events warrant connection with friends and family, plus offers of support and encouragement. At times in the special needs community, those outside the family are not sure how to reach out in a meaningful way.  Dr. Matt Stanford, my new executive director at The Hope and Healing Institute, has a particular passion for connecting the church with those struggling with mental health issues.  He refers to mental illness as the “no casserole diagnosis.” For some diagnoses there is an outpouring of compassion and assistance, cancer comes to mind. For other diagnoses, not so much. As with many special needs diagnoses, friends and even family are sometimes unsure how to respond. Sadly, for many families the response they receive is isolation rather than connection, silence rather than understanding.

What would it look like to embrace special needs families at the birth of their child, or time of diagnosis? What are the equivalents of gold, frankincense and myrrh to these families? The magi knew instinctively the right gifts for Christ: gold for a king, frankincense for Jesus’ priestly role, and myrrh for his role as a healer. What do today’s parents need? The priceless gift of time is as valuable as gold. The spiritual gift of prayer strengthens families. Finally, the healing power of a listening ear renews a weary mind.

As a special needs parent, in what meaningful way have others reached out to you?

Giving God, thank you for the gift of Christ. Thank you for the giving hearts of our friends and families who support us when we need it most. Amen.