EA/TEF Awareness Month Has Arrived

EA/TEF Awareness Month Has Arrived

EA/TEF Awareness Month Has Arrived

EA/TEF Awareness Month has arrived. Before writing the introduction for January 2021, I looked at last year’s introduction. It was refreshingly lacking in anything COVID or pandemic-related. It was, however, replete with mentions of a medical condition that caught families totally off guard and changed the course of their lives. It happened to my husband and I in 1982 when our first child was born in 1982 with Type C, the most common kind of EA/TEF. 

Since the pandemic began in March of 2020, my thoughts have often returned to the difficult days and months after our son was born. What we experienced then was similar to what our country is experiencing now. I think the stories other EA/TEF parents share this month will give readers hope as the pandemic continues. Because these stories make clear some truths I learned as an EA/TEF parent and as I interact with other EA/TEF parents.

Life is fragile.
Life is precious.
Life is hard.
Life can be good even when it’s hard.
You can endure more hard stuff than you think you can.
You are more resourceful than you know.
You are more blessed than you realized.
You can be changed for the better once you know that life is fragile, precious, hard, and good even when it’s hard.

If you’re an EA/TEF who believes these truths, please share your story in the comment box below. If you’re in the thick of the hard stuff and can’t imagine anything good coming from what you’re experiencing, share your story, so we can cry with you and lift you up. Because EA/TEF Awareness Month has arrived, and that’s how EA/TEF parents roll.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up 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 websiteSharing 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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Strategies to Meet the Needs of Typical Siblings

Strategies to Meet the Needs of Typical Siblings

Strategies to Meet the Needs of Typical Siblings

Strategies to meet the needs of typical siblings are the focus of this post by clinical neuropsychologist and special needs parent Jessica Temple. She shares 6 ways to show typical siblings how much they matter to your family.

My husband and I are working on balancing the needs of our two children. These are some of the strategies we are using.

Strategy #1

Ensure that all children are physically and emotionally safe. This means every child needs a safe place in the home and is not at risk of being hurt. 

Strategy #2

Communicate with typical siblings. In age-appropriate language, discuss the condition your child with special needs lives with, what it means, how it affects your family, and if typical siblings can catch it. Provide time for questions. 

Strategy #3

Acknowledge and praise milestones and accomplishments of typical siblings. Thank them for their help, understanding, patience, and the time they put in. 

Strategy #4

Give typical siblings time with friends. Also provide time with other kids who “get it” through in person and online sibling support groups. 

Strategy #5

Make sure to spend quality alone time with typical siblings. Be creative. Offer snuggle time in the morning, have secret jokes or rituals, present a special meal or ice cream time, go on an outing, or have special reading time. Be sure you are fully present and in the moment with just that one child. 

Strategy #6

Help your child develop coping strategies. These are a few favorite mindfulness and meditation strategies to try with your child:

  • Breathe in like an expanding balloon and exhaling as if blowing out a candle.
  • Create a mental/visual bubble that blocks out stress and lets all their favorite things inside.
  • Picture stress drifting down a stream on a leaf or floating away on a cloud.
  • Take mindful walks.  

Our family has made some positive strides using these strategies to meet the needs of typical siblings. It’s a process, but we are confident that we can raise both children to be happy and well-adjusted humans. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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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Jessica Temple, PsyD, ABPP-CN, is a board-certified adult clinical neuropsychologist. She has two children who have special needs. She and her husband, Lewis, host a podcast called Thriving in The Midst of Chaos, where they talk about all aspects of special needs including getting a diagnosis and treatment, self-care, relationships, transitioning to adulthood, school, and finances. They created Thriving in The Midst of Chaos to offer support to others in the special needs world as well as to provide an easy way to find the most useful resources. They aim to share helpful resources with others, advocate for improvement, change in the special needs world, and offer a different perspective on parenting.    To find out more about how Jessica’s work can help you, contact her at fubarpod@gmail.com or @midstofchaospod on all social media platforms.  

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What Did Mary Worry About?

What Did Mary Worry About?

What Did Mary Worry About?

What did Mary worry about after her baby was born? 

Gasp and sacrilege! How dare I entertain the idea of the mother of God worrying about the divine child entrusted to her care. Until I remember that though this baby boy was fully divine and fully human, his mother was not.  

The divinity of Jesus came from the Holy Spirit who is God. The humanity of Jesus came from Mary, who was wholly human. 

The Father, Son, and Holy Spirit didn’t have to worry–it’s a perk of being the triune God. 

But Mary–she’s a different story. Especially in light of her story.

She was a first time mom. An unwed teenager.
She endured a grueling donkey ride late in her pregnancy.
She went through labor and delivery in a stable without electricity or running water.
Her baby slept in the manger where hungry animals bellied up for breakfast.

Other than those immediate, trifling matters, what did Mary worry about when they took their baby home?

Infanticide. The Magi had told Herod the Great that they were going to worship a great king born in Bethlehem in Judea. To stomp out the competition Herod the Great, ruler of Judea, ordered the slaughter of all baby boys in Bethlehem ages 2 and younger (Matthew 2:16). 

Illegal immigration. God warned Joseph of what Herod was about to before it happened, so Joseph and his family fled to Egypt. (Matthew 2:13-14). The same Egypt where the Israelites had been enslaved before God appointed Moses lead them to freedom. Perhaps not a country that welcomed Jewish illegal aliens.

To read the rest of What Did Mary Worry About?, visit Key Ministry’s blog for special needs parents.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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 websiteSharing 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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Hygge Is Good for Caregiving Parents

Hygge Is Good for Caregiving Parents

Hygge Is Good for Caregiving Parents

Hygge is good for caregiving parents. So says guest blogger Mark Arnold who is here today to explain what hygge is, cite some impressive research, and encourage caregivers to add it to their lives this winter.

Hygge is a Scandinavian word for the cozy, comfortable conviviality that leads to wellness and contentment. Several studies show that people in the arctic circle have a mindset that helps combat the long, polar night. A bit of hygge might come in handy for parents of children with special or additional needs.

Kari Leibowitz, a health psychologist, conducted research in the Norwegian city of Tromsø, located 200 miles north of the arctic circle. In the depths of winter, it gets only a faint glow of indirect sunlight for a couple of hours a day. Despite this, Tromsø’s citizens don’t struggle with low mood or seasonally affective disorder (SAD) as might be expected. In fact, Leibowitz found that the general mental health in the city was in excellent shape.
Leibowitz created the Wintertime Mindset Scale to see whether a more positive outlook could explain the resilience of Tromsø’s residents. She asked them how much they agreed or disagreed with statements including:

  • There are many things to enjoy about the winter
  • I love the cosiness of the winter months
  • Winter brings many wonderful seasonal changes
  • Winter is boring
  • Winter is a limiting time of year
  • There are many things to dislike about winter

Those that favored the first three statements fared better in the adverse winter conditions than those who favored the last three. Many respondents commented that they didn’t understand why people would not enjoy winter, with all of the possibilities of winter walks and skiing, and snuggling under blankets with a warm drink in the candlelight!

What does this research into Scandinavian positivity teach us about why hygge is good for caregiving parents? 

Well, we all know it’s easy to be dominated by negative feelings, fears for the future, the mental and physical exhaustion we experience. But if wet rain ourselves to find the positives, to look for the opportunities to learn and adapt, perhaps we can find our own hygge too. We can discover ways to cope during our own times of winter, those dark days where it all seems too much. The more we try it, the better we get at it!
Our aim isn’t to sugar-coat, deny the difficulties we face, or hide from them any more than the citizens of Tromsø can pretend that the sun is still rising. However, by growing our own capacity to control our responses to challenges we may develop hidden reserves of strength and resilience to help us face each day.

Hot chocolate anyone?

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold.

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Ten Moments in a Caregiving Life Well-Lived

Ten Moments in a Caregiving Life Well-Lived

Ten Moments in a Caregiving Life Well-Lived

Ten moments in a life caregiving well-lived is a practice today’s guest blogger, Laura Spiegel is implementing this holiday season. May her ideas cause you to hunt for your own ten moments throughout December and beyond. 

As the holiday season nears, I’m finding myself in moments of reflection. This year has highlighted the fragility of life. The impermanence of it all. It’s also reminded me that a life well-lived isn’t always momentous. It’s a smattering of small moments that together weave a tapestry of love, laughter, joy, struggle, and yes, even loss. 

For parents of children with special health care needs, it can be especially important–and especially difficult–to nurture the blessings that come alongside the battles. As a mother of a young child who lives with cystic fibrosis, I know that my mind spins more readily toward what’s not going well–or what could one day not go well–rather than focusing on the here and now.

To combat that, I’m working on savoring the small things that bring joy to my family and to me. In that spirit, here are ten simple moments from last week that have infused our lives with, well, life. 

  1. My daughter stuffs the Christmas cards, her face a picture of glee. She reads each name with care and is bewildered when her stamps stick sideways. It’s not a hassle for her; it’s a delight.
  2. We read my mom’s advent book as we light the purple candles before dinner. It’s covered in grease stains, and my kids pride themselves on the little they’ve memorized. Each night, this reminds me of home.
  3. We look at a photo album from my mom’s childhood. There she is with her brothers, on the roof of the house like there’s no tomorrow. (And no helicopter parents). Her grin is as wide as the sky. 
  4. Our potted plants are inside for the winter. Maude, the hibiscus, and Doris, the canna lily, are doing well. Every morning, my husband marvels at the pink blooms. They last but a day before falling to the ground. But their hint of life helps keep the Indiana gray at bay.
  5. Speaking of Maude and Doris, did I tell you that my appliances have names? Or rather, the best ones do. There’s Ophelia the oil lamp, Olive the vacuum, and my personal favorite: Mildred, the cell phone cleaner. I find that a simple “Thank you, Mildred!” knocks the cleanliness up a notch.
  6. A package of treats arrives from the children’s hospital. They want to thank their volunteers for their service. We have caramel/cheesy corn for breakfast, lunch, and dinner.
  7. I meet old friends on the back porch. We wear Golden Girls masks as a tribute to our favorite teenage pastime. We trade memories and drink wine through straws. Finding a way to sip while masked? What could be better than that?
  8. My daughter’s best friend drops off a note to thank her for being a friend. These seven-year-olds have bigger hearts than most anyone I know. Their unabashed love and appreciation for each other is a gift. 
  9. A new family member arrives. Leo the kitty reminds me of my favorite girlhood feline. He likes to sit on my son’s lap and lick his arm. They are in love.
  10. The tree twinkles with shiny lights, but my eye is drawn to the homemade ornaments. The handprints of my kids at five months and three. The painted reindeer from preschool. The crocheted dog and cat from my grandma. Our tree reminds me of love, warmth, and life. And if my husband has his way, it will stay up well into 2021. 

This season can be tough, especially for those of us who have lost loved ones or are separated from those we love. From my family to yours, I wish you health and safety this holiday season. And I wish you ten moments in a caregiving life that bring a smile to your face and remind you, in the end, of a life well-lived. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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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Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at laura@paintherincolor.com, and on Facebook and Twitter.

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Concerns of Siblings of Children with Special Needs

Concerns of Siblings of Children with Special Needs

Concerns of Siblings of Children with Special Needs

Concerns of siblings of children with special needs are often overlooked by parents overwhelmed by caregiving needs. In this post Jessica Temple, a clinical neuropsychologist and special needs parent, addresses sibling concerns head on.

Our oldest child began to exhibit aggression around the time his younger brother was born. He was later diagnosed with autism. We tried  to protect the new baby from being hit, pinched, smacked, but it wasn’t always possible. I felt guilty whenever something happened to the baby Now the kids are 2 and 4, and I feel guilty for other reasons. Such as focusing my attention on the sensory needs of older boy while coordinating and participating in therapies at the expense of time with his brother. This got me thinking. What do siblings of children with special needs need? How do they see things? What can we as parents do to better support typical siblings?  

Concerns of Siblings of Children with Special Needs

It is helpful to be aware of the concerns siblings of children with special needs may have. They see their parents spending time and effort on the child with special needs, and they see parents struggling to meet their own needs. They see the stress their parents are experiencing. This can make typical siblings strive for perfection so they won’t be an added burden to their parents. They become mini-adults to relieve the load on their parents. In some cases, parents ask siblings to help with the care of their sibling throughout the day. Some children are expected to be their siblings’ primary caretakers once they reach adulthood or their parents have passed away, without input about their wants, needs, and desires. 

They may believe they can’t share feelings common to special needs siblings like these:

  • Inadequate time with parents.
  • Their parents don’t care as much about them as they do the other child.
  • Anger or resentment toward the sibling who receives more attention. 
  • Embarrassed by the behavior of a special needs sibling.
  • Their parents brush off their problems or concerns. 
  • Isolated from friends because of their siblings’ behaviors or embarrassed when friends ask questions.

Even though their issues may appear small compared to those of the child with special needs, they are valid and important and should be approached as such. 

Managing Parental Expectations in Light of Sibling Concerns

Parents aren’t always aware of their expectations regarding their typically-developing children. Neither expectations are too low or too high are fair. It is important to set and convey realistic expectations of each child along with unconditional support. Parents also need to allow typical siblings to work through their feelings by implementing these practices:

  • Provide patience, understanding, time, and guidance. 
  • Validate their concerns. 
  • Model ways to cope and manage emotions. 
  • Allow them autonomy to choose how involved they want to be with their sibling, both on a day-to-day basis and in the future. 

It’s unfair to require the assistance and participation of typical siblings without involving them in the decision-making process. They have a right to their own lives.

Jessica will be back in a few weeks with more helpful strategies for parents who want to address the concerns of siblings of children with special needs.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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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Jessica Temple, PsyD, ABPP-CN, is a board-certified adult clinical neuropsychologist. She has two children who have special needs. She and her husband, Lewis, host a podcast called Thriving in The Midst of Chaos, where they talk about all aspects of special needs including getting a diagnosis and treatment, self-care, relationships, transitioning to adulthood, school, and finances. They created Thriving in The Midst of Chaos to offer support to others in the special needs world as well as to provide an easy way to find the most useful resources. They aim to share helpful resources with others, advocate for improvement, change in the special needs world, and offer a different perspective on parenting.    To find out more about how Jessica’s work can help you, contact her at fubarpod@gmail.com or @midstofchaospod on all social media platforms.  

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