Lost in Translation

Lost in Translation

Lost in Translation

A little more than a year ago, a friend took a few of my books to a special needs family camp in Pelchi, Latvia. Partway through the week, she sent a text. “They love what you write about. Can you come next year to work with the moms?”

“YES!” I immediately texted back. “Count me in.”

From that moment on, my resolve to attend remained firm. It was bolstered when the fundraiser organized by dear friends in my church Connection Group raised the exact amount needed to cover expenses. It grew stronger when someone donated money to purchase copies of A Different Dream for My Child for all the moms attending camp. The only time my resolve wavered was when the little naysayer voice in my head whispered, “How are you going to communicate? They speak Latvian. You speak English.” But my friend, who was attending the camp again, said a translator would be assigned to us for the entire camp.

So I shushed my personal naysayer and packed my bags.

We made it to camp without a hitch. Our personal 24/7 translator, on the other hand, did not. Many people pitched in to fill the gap. A young woman with spina bifida who has attended the camp for several years and just graduated from the university in Riga with a degree in media communication. The pastor who has helped plan and grow the camp for several years. His wife and two teen-aged daughters.

Still, the language barrier made our morning support group slightly awkward.

Some things were lost in translation. Maybe because the moms’ support group translator wasn’t a mom, but a man. Maybe because I overcompensated by talking louder, smiling too much, and gesturing frantically. Maybe because my ability to put faces to names and to pronounce names correctly was an epic failure. Maybe because these Latvian moms had been twice burned by a culture that holds women in low regard and mothers who give birth to children with special needs even lower.

To read the rest of this post, visit Key Ministry’s blog for parents of kids with special needs.

Do you like what you see at jolenephilo.com/? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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How To Find Special Needs Parenting Support, Part 2

How To Find Special Needs Parenting Support, Part 2

How To Find Special Needs Parenting Support, Part 2

Guest blogger Karen Jackson is visiting Different Dream this week to finish her series about how to find special needs parenting support. If you missed the first part of the series, you can find it in Part 1.

How To Find Special Needs Parenting Support, Part 2

#5: Professional Support

I have seen quite a few mental health professionals over the years and this has been invaluable to me as I continue on this unique parenting journey. I just told someone the other day that I think everyone who is a parent of a child with a disability needs to have a professional counselor to talk to at some point. As a Christian, I have mainly found Christian therapists and counselors to work with, but what really matters is that you find someone you feel comfortable with and that has some experience with the issues you face.

Recently, I have worked with a pastoral counselor in the area where I live. I found that talking with someone who can help me navigate through the challenges of leading a ministry on top of a full life as a mom and teacher has been extremely helpful.

#6: Online Support

A few years ago I started to use Facebook and never anticipated that social media could be a source of personal support. Late one night, however, I was still up at 12:00 am, unable to sleep and very upset over my daughter’s recent bout with self-injurious behavior and aggressiveness. I opened my Facebook page and saw that a friend that leads a ministry in another part of the country, (Barb Dittrich with Snappin’ Ministries) was online. I personal messaged her and asked for prayers. She and I messaged back and forth several times. I was so grateful for that support in the middle of the night!

I have come to realize more and more that people isolated like those parenting children with special needs often are, use social media and online connections for vital support.

Despite all the things we hear that are negative about using social media, I believe the development of the many blogs, websites and online groups are extremely valuable to the disability community and parents in particular.

#7: Faith Community and Other Community Groups

Getting involved in my church and starting Faith Inclusion Network (FIN) have also been a source of personal support. As we all know, channeling our experience into ways to help others is always therapeutic in some way. I am blessed to know many people in my own church and faith communities all over our region through my work with FIN. You don’t have to start a big effort, though to get involved. Just be present and look for opportunities to volunteer and be a part of your faith community. It is likely you will find people to support you as you help and support them.

#8: Personal Faith

As people of faith know, the emotional and practical support of friends, acquaintances, support groups and professionals are not a substitute for our loving God. I believe that God uses all these people to help me, but I also know I can go directly to Him.

In 2 Corinthians 1: 3-4, a favorite scripture of mine.

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God.”

How Do You Find Special Needs Parenting Support? Do you have a special needs parenting support group? We'd love to hear how it came to be. Leave a comment!

Karen and one of her dear support group friends.

 

I am thankful for the many ways I receive help and support in my life and grateful that I am able, even if I am still learning, to give that support to others. I pray that if you are the parent of a child with special needs reading this that you find the support you need through family, friends, professionals and community, but mostly, I pray that you find that comfort and support through our amazing and compassionate Lord.

How Do You Find Special Needs Parenting Support?

Do you have a special needs parenting support group? We’d love to hear how it came to be. Leave a comment!

Do you like what you see at jolenephilo.com/? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Karen Jackson is the Executive Director of FaithInclusion Network of Hampton Roads where she lives with her husband and three children in Norfolk, VA. She is also the author of the recently published book, Loving Samantha.

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How To Find Special Needs Parenting Support, Part 1

How To Find Special Needs Parenting Support, Part 1

How To Find Special Needs Parenting Support, Part 1

Different Dream is pleased to once again welcome guest blogger Karen Jackson. She’s here with the first of 2 posts about how to find special needs parenting support.

How To Find Special Needs Parenting Support, Part 1

I think I may have become an expert at finding personal special needs parenting support. Not because that has been my goal over the past 18 years as a mom to a child with special needs, but just because I seem to need more support than any one person or group can give! From professionals and family to friends and acquaintances from many different areas of my life, my support system is expansive. The following is a non-clinical, definitely unresearched list developed out of my own experience as a mom to a child with a disability. I am hopeful that it may help another parent in my situation, or it may just be a thoughtful exercise for an experienced special needs parent to examine the support they have or have not received thus far on their unique journey.

#1: Special Needs Parenting Support Groups

I strongly believe in support groups. They bring people together who are experiencing similar life events and give them an opportunity to share in an informal settinAre you looking for special needs parenting support? Karen Jackson offers 4 ways to find it.g. I couldn’t find the kind of Christian support group I was seeking when my daughter was young so I decided to start my own at my church. Although I no longer facilitate in the group, I still attend and enjoy the laughing, the crying and the fellowship of my Living in Holland Christian Support Group at another small church in Norfolk, VA. Even though we only meet monthly, the friendships I have developed with others who share a similar parenting journey are strong and important to me. It is a blessing to get the opportunity to talk with other moms who understand the challenges of raising a child with a disability.

#2: Co-Workers

For years only a select few at my school where I teach music knew much about my home life. I actually preferred it this way because I wanted an escape. I desired a place that my identity was not as a mom to a daughter with special needs, but as a professional music educator. I, of course, shared some of my personal life with colleagues and administration but overall most people did not know the extreme challenges I faced at home. I certainly did not share about my daughter and autism with parents of my students; in all honesty, I did not think they would understand.

That began to change as I began to advocate in my own church. I offered to share at my school and gave a few disability awareness talks for the students but most people still did not fully comprehend what my home life was like as caregiver for a child on the spectrum.
Last year I published a book entitled, Loving Samantha and for the first time, other parents at my school learned about my daughter and some of the personal challenges we face. And a surprising thing happened-they offered and continue to offer their support and encouragement with kind words and practical help in times of crisis.

Recently, I found myself in the ER with Samantha and had no food at dinner time, not even a package of crackers in my purse! I called a friend, a parent at my school who lives near the hospital and asked if she could please bring me some kind of food. I could not leave Samantha’s side, even for a few minutes and I was starving. She arrived with a Panera Bread bag in hand, hugs and words of comfort. What a blessing and one I would have missed had I not been willing to cross that barrier and share with people related to my work.

#3: Friends

Most of us moms have developed friends along the parenting journey. I am blessed with many including a circle of very close women friends. These ladies have been there to listen to me, to pray and even help when things get complicated trying to manage all of my kids. They are strong women of faith and I can’t imagine life without them. Some are moms who have similar parenting journeys but not all. I try to be there for them, too, with love, prayer support and encouragement.

#4: Family

Yes, it is tough topic sometimes. Family can be more a source of challenges rather than support, I know. But what I have learned is that it is important to find out the best way they are comfortable supporting me and ask for help in that area. Whether it be coming to visit (or not), praying, financial support or anything else, extended family can be a source of strong encouragement with some careful cultivating and prayerful insight.

My immediate family (husband and three children) are of course, supportive as well. My husband and I try hard to share responsibilities, although since he works a lot, most of the home caregiving falls to me. We have worked hard to understand each other’s roles in the family though and am happy to report we will have been married 23 years this summer.

My boys are extremely caring and supportive too. They haAre you looking for special needs parenting support? Karen Jackson offers 4 ways to find it.ve learned, as siblings of a person who has a significant disability, to step in and help when things get tough with unexpected medical issues for their sister or challenging behaviors.

How Do You Find Special Needs Parenting Support?

Do you have a special needs parenting support group? We’d love to hear how it came to be. Leave a comment!

Part 2

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Karen Jackson is the Executive Director of Faith Inclusion Network of Hampton Roads where she lives with her husband and three children in Norfolk, VA. She is also the author of the recently published book, Loving Samantha.

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72 Hour Special Needs Emergency Survival Guide

72 Hour Special Needs Emergency Survival Guide

72 Hour Special Needs Emergency Survival Guide

Today, I’m pleased to introduce guest blogger, Gary Stratton. Gary was a volunteer firefighter for 26 years and served on a Critical Incident Stress Debriefing Team that helped firefighters and EMTs deal with the psychological trauma of their jobs. He’s created a special needs emergency survival guide for Different Dream readers. In the interest of full disclosure, Gary is also my cousin.

72 Hour Special Needs Emergency Survival Guide

I am a retired firefighter/EMT. I also live with my own special need—severe sleep apnea that requires a respirator.  Living without electricity is not an option. Therefore, I plan for survival during short-term emergencies. 

After Hurricane Katrina (August 2005), FEMA provided information about short-term survival to fire departments across the USA. The information FEMA provided to the public was limited and few paid attention. In Iowa, short-term survival was reinforced during a February 2007 ice storm followed by a blizzard. Each town and fire department had to fend for itself. Mutual aid was impossible. Five hundred miles of power lines lay on the ground. A prolonged outage was forecast. I haven’t forgotten the lesson.

The FEMA lesson from Katrina is a community must: be prepared to survive for seventy-two hours before expecting arrival of outside help. Firefighters needed to prepare their families to survive for seventy-two hours without them. After the ice storm, our firefighters discovered the elderly were prepared to survive. Younger generations were clueless. The electrical grid has been very reliable in their lifetime, so they had no idea of how to survive without power.

However, weather or terrorism can disrupt the power grid. I had a generator before the ice storm in 2007, but afterwards I attended to other details. I learned it’s not complicated to survive seventy-two hours in your home. Surviving is accomplished with planning and common sense. The basic needs are food, fiber, and shelter. Special needs people or families have some extra details to address. Here are some ideas to get you started.

Special Needs Emergency Survival Guide: Food

  • Canned meats and foil packs of salmon have a long shelf life, so keep some on hand.
  • Purchase a manual can opener.
  • Keep a couple flats of bottled water on hand.
  • Seal bath tub drain with gorilla tape and fill with water.
  • A gas grill can be used for cooking, so keep a spare bottle of gas.

Special Needs Emergency Survival Guide: Fiber

  • Purchase sleeping bags and extra blankets at garage sales. 
  • Open up a sleeping bag and use it as a quilt on the bed.

Special Needs Emergency Survival Guide: Shelter

  • Purchase a generator and learn to use it safely.
  • Purchase a siphon to get gas from a car to use in the generator.
  • Purchase heavy-duty extension cords to rotate power to the refrigerator or other appliances. 
  • Choose a backup heat source (LP gas fireplace or hanging gas heater in garage with 110 volt plug for generator)and learn how to use it safely. 
  • Seal windows and doors with blue painter’s tape to eliminate drafts.
  • Keep a roll of gorilla tape on hand.
  • Purchase 12 volt marine batteries to supply power for some medical devices. You can also purchase adapters or you can build your own.  (My marine battery is spill-proof and it runs my sleep apnea machine for four nights.)  
  • Purchase a 12 volt automotive refrigerator for storing medications.
  • Use LED flashlights and lanterns because they run longer on a set of batteries.
  • Create a basic first aid materials in case emergency medical services aren’t available.

Don’t forget the lessons of the past learned by those who have survived emergencies. With planning and common sense you can survive seventy-two hours without outside help just like they did.

Your Special Needs Emergency Survival Guide Suggestions

Do you have any special needs emergency survival guide ideas from the past? Share them in the comment box so more parents can be prepared for emergencies in the future.

 

Do you like what you see at jolenephilo.com/? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Gary Stratton lives in southwest Missouri where he writes stories, builds a model train layout, and fishes.  Now retired, his career spanned 36 years designing and testing farm tractors. He has four children, two boys and two girls.  His eldest daughter was killed by a drunk driver in 2000. After the death of his wife of 40 years he began writing stories about his journey of life from Iowa farm boy to mechanical engineering technician to family man to volunteer firefighter/EMT to learning to be a story writer.  He has written a family history for his children and an ethical will for his grandkids. Gary wrote a book on the history of his fire department from 1899-2012.  In 2015 he started a website, garystrattonfirefighter.com, for his story libraries. He encourages retired folks to write an ethical will for their grandkids, and the grandkids yet to be born and to document stories of their family histories.

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When’s the Time for Special Needs Parents to Seek Professional Counseling?

When’s the Time for Special Needs Parents to Seek Professional Counseling?

When’s the Time for Special Needs Parents to Seek Professional Counseling?

Different Dream continues to tiptoe through PTSD Awareness Month by addressing stress and PTSD issues that affect special needs parents. Today’s post by psychologist Liz Matheis answers a question every special needs parent asks at one time or another: When’s should special needs parents seek professional counseling to deal with the stress of caregiving?

When’s the Time for Special Needs Parents to Seek Professional Counseling?

When you are a primary caretaker of a child with special needs, often your needs become secondary or even tertiary to those of your little one. That is, you are managing the many needs of your child or children with special needs. But in the process, you find that your ability to handle the day to day is being negatively compromised. You may be traumatized yourself, but continue to chug along so that you can keep the train moving. So the glaring question becomes this: when do you know that you need to do something for yourself?

The answer is simple: when you are not able to maintain your roles in your life, and function on a day to day basis.

Let me be a little bit more specific by posing 3 questions…

Where is Your Attention Focused?

How is your attention? Are you able to follow through on tasks that you’ve started, or are you finding that you start a task and then stop to begin another one? Are you able to convey a clear thought without being confused? Are you able to think through one particular content at a time? When you find yourself being distracted, confused or in a haze, it’s time to acknowledge the level of distress you are feeling and how it is impacting your ability to function.

Which Emoticon Describes You Today?

If you are noticing that you are feeling tired, un-enthusiastic, sad, anxious, or unmotivated, it’s time. Are you losing interest in your friendships? Do you dread starting your day? Are you exhausted all day but find yourself unable to fall asleep soundly and easily at bedtime? If you are feeling more glum for most days than not, it’s time to focus on your needs.

Too Much or Too Little?

When stress is high, sometimes appetite and sleep are impacted in one of two directions. Some sleep a great number of hours and still feel tired, while some are unable to sleep throughout the night. Some people find comfort in food and eat excessively, while others have little to no appetite.

Think about your eating and sleeping habits lately. Are you eating healthy food and in healthy quantities? Are you able to fall asleep and stay asleep? Are you sleeping more than 8 hours per night and still crave more sleep?

When It’s Time for Special Needs Parents to Seek Professional Counseling

As a traumatized parent, it is often difficult to acknowledge the signs of distress and exhaustion within yourself when you are spending most of your time and energy caring for your child with special needs. Take a few minutes to assess your focus, mood, eating and sleeping habits by answering the 3 questions posed above. If your answers indicate a high stress level, it’s time for special needs parents to seek professional counseling to help cope with caregiving demands.

How Did You Know It Was Time?

Have you sought help to cope with your caregiving duties? When did you know it was time to seek professional help? Leave a comment if you like.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

Author Jolene Philo

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Travel and Kids with Special Needs, Part 2

Travel and Kids with Special Needs, Part 2

Travel and Kids with Special Needs, Part 2

Guest blogger Kathy Kuhl is back at Different Dream to finish her series about how changing our attitudes can make summer travel easier for special needs families. She writes from first-hand experience traveling with challenging children. Today she adds 3 more tips to those she shared in Travel and Kids with Special Needs, Part 1.

Travel and Kids with Special Needs, Part 2

Traveling with challenging children can test our planning skills, but even more, it tests our character. What can we do to cope better? Last time I gave you three tips. Today, three more:

4. Remember why you travel.
In his book A Praying Life, Paul Miller describes his first speaking trip with his autistic daughter Kim. He had wanted to give his wife a break. She was overjoyed to have a respite instead of solo duty.

Despite years of caring for Kim, Paul hadn’t realized how hard this weekend trip would be. When they got to the airport, he discovered Kim didn’t have a book, didn’t want TSA to scan her speech computer, and didn’t want to turn off her CD player for take off. Each disappointment moved her closer to a meltdown, her low-pitched whine announced. As other travelers stared, her dad was helpless and embarrassed.

At the conference, Paul saw the hidden blessing of travel with his daughter. While he was the speaker, he received lots of attention and praise. But the humbling travel difficulties reminded him why he was traveling: to serve God through teaching and to give his wife a weekend off—not to build his reputation.

Most of us aren’t traveling with kids to serve at conferences, but we can all benefit if we remember why we go—because we must bring them as we work, to spend time with family, to get our children special care, or perhaps to show our children beautiful, historic, or fun places. Focusing on our purpose can help strengthen our resolve to be patient in difficulties.

5. You’re not responsible for what others think or do
On the road and at home, we are responsible for our behavior and attitudes. We are not responsible for the reactions of others. If a child melts down on a plane and our seatmates are obnoxious, we can sympathize with their discomfort. We can apologize to them for forgetting to pack the teddy bear or special food. We can learn from our mistakes. But we can’t parachute out of that airliner (much as we might wish to), and we aren’t responsible if others decide to be nasty.

6. Look for what you can enjoy
Finally, keep looking for blessings, even small ones. Last year, I sat behind a grandfather taking his two small grandsons on their first flight. From the first rush of accelerating to take off, to the shrinking objects below, the six-year-old by the window was thrilled. Over and over, he exclaimed, “I thought it would be great, but this is really great!” We strangers sitting behind him couldn’t help grinning. His joy was infectious.

Our kids can help us see pleasures in a trip that we might otherwise miss. So enjoy the journey, as best you can. Then, enjoy home.

Your Tips about Travel and Kids with Special Needs?

Have you discovered effective tips about travel and kids with special needs? Leave them in the comment box if you like!

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Kathy Kuhl is the author of Encouraging Your Child, Staying Sane as You Homeschool, and Homeschooling Your Struggling Learner. She advises parents to help them teach exceptional children at home. Visit her website and blog at Learndifferently.com.

Author Jolene Philo

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