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.

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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.

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Healing for Every Special Needs Parent’s Heart

Healing for Every Special Needs Parent’s Heart

Healing for Every Special Needs Parent’s Heart

Different Dream welcomes Dove Award winning songwriter, author, and speaker Steve Siler as today’s guest blogger. He shares the story that led to his recently released book about parenting a child with spina bifida and how he and his wife found the healing every special needs parent requires.

Healing for Every Special Needs Parent’s Heart

My wife Meredith and I have always chosen to be rather private about our personal story surrounding the diagnosis of our son’s spina bifida and subsequent four years of surgeries. I first broke that public silence with a blog post on the Music for the Soul website.

But when I decided to write a book about my journey in ministry I felt I needed to be even more transparent about the events surrounding our son’s birth and early years. After all, the experience had gone a long way toward deepening our faith and enlarging our compassion for others.

My wife, understandably, was reluctant to share the details we’d always kept to ourselves. Its amazing how much pain we still carry in our hearts all these years later even though our son’s outcome turned out to be much better than we were originally led to expect.

The Breaking of Every Special Needs Parent’s Heart

Ultimately, my wife graciously allowed me to share part of our story in my new book Music for the Soul: Healing for the Heart. As I was writing I had the chance to relive memories that I believe, although bittersweet, shine a light on the range of conflicting emotions that co-exist for parents loving a child with special needs.

We’d moved to Nashville from Los Angeles a little less than a year before Henry was born. When he was diagnosed I called the pastor from our old church in Los Angeles for comfort, Dr. Larry Keene. He told me, “It’s been my experience that special needs kids are compensated in the spirit.”

There was a side of me that thought he was just trying to make me feel better. But it wasn’t long after Henry was born that I felt as if I began to experience what Larry was talking about.

The Healing of Every Special Needs Parent’s Heart

Henry’s spirit was evident from his first steps. In the beginning there’d been some doubt as to whether he’d ever be able to walk. I still remember how I felt when Henry pulled himself up and took his first steps with casts on both legs!

Overjoyed. Distressed.

In his preschool years the sweetness of his spirit emerged. I found myself saying, “Henry’s the only person in our house with a reason to be upset and the only one who never is.” Even as a little guy he never met a stranger. He’d as soon hug a stranger as look at them.

When he got to be five or six we started playing touch football in the yard. “I’m a fast runner,” he’d proclaim, breaking my heart with his effort. His running was barely a fast walk.

He wanted to play in a soccer league so we signed him up. We’d sit in the stands and watch Henry’s futile efforts to be part of the action. He’d spend the entire game chasing after everyone else. The only time he’d ever get to touch the ball was when someone kicked it to him accidentally. But he worked so hard. At game’s end he’d look like he had taken a shower in his uniform.

So we knew there wasn’t any quit in him. But then came the day of a race at his elementary school. I was so afraid he was going to be embarrassed about finishing last. Instead he “won” the race before it was even over.

The Compensation of Spirit that Marks Every Special Needs Parent’s Heart

The teacher shouted, “On your mark. Get set. GO!” All the kids took off. But when one little girl got her feet tangled up and went down in a heap it was our Henry who stopped, turned around, came back and helped her to her feet.

Compensated in the spirit.

As parents of special needs kids we understand that while our kids may not be the fastest ‘runners’, they win a different kind of race every day of their lives.

How Has God Healed Your Special Needs Parent Heart?

Now that Steve shared how God healed his broken heart, it’s your turn. How has God worked healing in your heart and in your child? Leave a comment.

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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Steve Siler is a Dove Award winning songwriter, author, and speaker. He is director and founder of Music for the Soul, a ministry that uses songs and stories as a bridge to hope and healing. He and his wife Meredith have two grown children and have recently become grandparents for the first time! Many years ago their son was diagnosed with Spina Bifida in the fourth month of pregnancy. At that time Steve wrote a song called ‘Whole in the Sight of God’ to help him process what he was feeling as a man about to become a father to a son with special needs. This song later became the basis for a Music for the Soul resource for those loving a child with special challenges. Later, after experiencing the prolonged illness of his mother and its impact on his own father, Steve produced a resource called ‘Dignity: Songs and Stories for Caregivers.’ You can read Steve’s blog and see these and other resources at www.musicforthesoul.org.

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Travel and Kids With Special Needs, Part 1

Travel and Kids With Special Needs, Part 1

Travel and Kids With Special Needs, Part 1

School will soon be out for the year, and that means the summer travel season will soon be here. Guest blogger, Kathy Kuhl, is a mom with first hand experience traveling with challenging children. She dropped by Different Dream to offer advice about how to change our attitudes to make summer travel and kids with special needs easier. She’ll be back in a few weeks with more suggestions for parents.

Travel and Kids with Special Needs, Part 1

A young businesswoman walked by me at San Diego airport. She turned, looked at the baby in my arms, smiled, and said, “She’s absolutely perfect.”

I thanked her, but felt compelled to say, “She cried all the way from New York.”

“She’s beautiful,” the woman repeated and walked on.

Why do we dwell on the worst parts of travel with kids? How can we have better attitudes?

Travel with children can be tough. Even if your car runs fine, if everyone stays healthy, if you don’t miss any flights or lose that beloved teddy bear, it is stressful. Kids miss their routine. They tire more easily.

How can we enjoy travel with challenging children?

1. Give thanks for our children.
As New Orleans’ Saints tight end Benjamin Watson wrote, when we travel with our kids, we forget to be thankful. After he and his wife got their four kids under seven through TSA and onto a plane, Watson admitted that he was “a bit perturbed that his kids were acting like… kids.”

For us with children with special needs, it’s harder. Our kids may have sensory issues that make it hard to cope with noise and unfamiliar sensations. Because our son with AD/HD couldn’t tolerate long drives, we rarely drove more than three hours a day. How much more complex travel can be for those managing mobility issues.

Food sensitivities complicate travel, too. We plan and pack extra. But if your child needs protein, or gluten-free, or amine-free, and you’ve run out, what do you do?

It took a stranger to remind Benjamin Watson that his kids are a blessing. A flight attendant told him it was “so great to see a big family,” explaining that he and his wife were childless after twenty years. Ouch.

Yes, our children are blessings to thank God for.

2. Give thanks for safe travel.
On some horrible days, our children may behave like heavily disguised blessings. But we cringe at the thought of them getting hurt. Safe travel is a blessing we usually take for granted.
My recent trip to West Africa pointed this out. Our buses broke down three times in 260 miles and 110 degrees. We were thankful for shade while waiting, for water, and for arriving, finally. Instead of saying “Bienvenue”—“welcome”—the West Africans say “Bonne arrivée!” literally, “Good arrival!” Arriving is good.

3. Recognize who’s in charge.
Travel with kids shows us we aren’t really in charge. Though we plan carefully, things go awry. Travel exposes our limitations. I forget things and I don’t plan perfectly. Travel also exposes the limits of our power and character. Mommy can’t always make it better. Will I remember not to snap at my husband and nag my kids? Will I remember that God is in charge, and be content? Will I trust he will work everything out for good?

In the next post in this series, I’ll look at more ways to make your travel easier with challenging children.

Travel and Kids with Special Needs, Part 2

Your Thoughts About Travel and Kids with Special Needs

What are your best tips about travel and kids with special needs? Leave them in the comment box. And come back in a few weeks for the final post in this series.

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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