Category Archives: Special Needs Parenting

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 3: Careers and Roles

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Golden Wedding Ring by Danilo Rizzuti courtesy of FreeDigitalphotos

Career change is a key theme that emerged from my recent special needs marriage focus group.  When couples begin to raise a family, adding children to the household brings about big changes. Juggling two careers plus a family comes with challenges. Responsibility and roles within the household cannot help but shift. This happens even within typical families.  When special needs are present the impact to household roles and careers can be even greater.

According to statistical data evaluated by Dennis Hogan in Family Consequences of Children’s Disabilities, mothers in particular are less likely to return to full-time work if raising child with special needs than if raising a typically developing child.  The more severe the disability, the greater the likelihood that one parent will stay home. The parent who remains in the workforce often works two jobs or moves into a position that includes much travel due to those jobs offering a higher salary.

These trends within special needs households were reflected within my focus group. At least half of those participating gave up highly specialized careers in sales, accounting, medicine and performing arts.  Several changed from full-time to part-time employment, switching to less demanding jobs in order to be more available to their child and spouse. These career changes were not part of the plan when having children and parents felt the impact deeply. Issues of identity, purpose, and self-worth all came to light.  These are major life changes and cannot help but have an impact within a marriage as roles and responsibilities are resorted. Each parent found great value and rewards in having more time with their children. There were very positive blessings that came with that career shift. Those greatly helped balance some of what was missed, such as a dearly loved job, colleagues, and a higher income.

Much of our discussion boiled down to a sense of purpose. Our purpose in life changes right along with careers and roles. I recall on my own journey with special needs parenting that I needed to re-arrange my career as my son’s needs became more clear as he grew from being a toddler and into pre-school and beyond. I gave up a full-time career and stayed home for several years, gradually adding back part-time employment and eventually full-time. In the process it felt as though I was continually recreating myself, fulfilling different roles and purposes. My experience is highly typical based on research as well as my recent focus group.

How can couples stay on track in the midst of these changes? Here are a few suggestions:

Agree as a team about division of labor inside and outside the home. Work toward an understanding that both spouses are equally valued and equally necessary within the household, even when contributing in different ways.

Communicate about needs and expectations, especially when roles change.

Maintain a healthy sense of purpose in the midst of transition. Focus on the positives that come with changing roles and responsibilities and acknowledge what you miss.

Explore your interests and abilities. What are you good at? What do you like to do? How can you use those talents in different ways to fill something that you may miss from a former career?

Create a long-term plan that includes personal goals for both spouses and look at how those plans can be fulfilled as your child grows and develops.

Caring God, we give thinks to you for the children in our lives and for the ways that our lives are blessed through them.  As they grow, we grow right along with them, learning to fulfill a new purpose.  Help us to discover new paths and walk them in a way that is pleasing to you. Amen

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)

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

Focus on Marriage

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Golden Wedding Ring by Danilo Rizzuti courtesy of FreeDigitalphotos

Last week I conducted a small focus group of special needs parents on the topic of marriage.  Two of the most rewarding and most challenging relationships we enter into are that of spouse and parent. Both relationships are full of wonderful rewards, surprises, and joys. They may also be filled with heart-break, miscommunication and challenges.  When a child with extraordinary needs is part of this dynamic, the challenges within relationships can increase exponentially.

Based on the input from my focus group I will be offering to a support group that I lead three weeks of strategies to help strengthen marriages in the areas where they expressed the most concerns.  Each week I will share that information with my readers. Keep an eye out in the coming weeks for ideas related to communication, careers and staying connected.

No one has a perfect marriage, including me.  For that I am grateful. Perfect is over-rated.  Perfect leaves no room for learning, trying new things, exploring life together, making mistakes, and finding forgiveness. Real marriages need work and attention, even more so for those with special needs children. While we are not perfect, we are made for relationships from the moment we are born. Relationships that matter are worth our time and attention.

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 realtionships in our lives that sustain us, filling us with love and hope. Help us to strengthen all of our relationships and equip us to repair the ones that are fragile and in need of healing. Amen

Lorna Bradley

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

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

There’s No Place Like Home, There’s No Place Like Home…

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Rainbow_Gathering_welcome_home

Three times a year I get to go home and see my mom.  It’s hard living far away. Each time I start to get excited to see her as the date gets closer and I feel sad when I have to leave. Having my next trip already scheduled softens the blow.

There is nothing like going home. It is a welcome respite. I sleep better when I am there and the air in my hometown feels fresher, the colors are brighter, the songs of the birds are sweeter. Whether we are canning peach preserves or baking cookies or going for an adventure to the beach, the days are marked by laughter and new memories. It is true what they say. There is no place like home.

I hope whatever place is home for you is a place that you get to visit often and refresh your soul.

I do not cease to give thanks for you as I remember you in my prayers. (Ephesians 1:16 NRSV)

Renewing God, Thank you for my mom and a respite that renews the soul.  May all be so blessed. Amen.

Photo: Welcome Home with Rainbow Originally uploaded by Jaknouse (Transferred by Gobonobo) (Originally uploaded on en.wikipedia) [Public domain], 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