Love Is a Child’s First Language

Love Is a Child’s First Language

by | Feb 4, 2021 | Different Dream, How-Tos, Keeping Love Alive in Special Needs Families, The 5 Love Languages® for Special Needs Families

Love Is a Child’s First Language

Love is a child’s first language. This truth is the title of the fourth chapter in Sharing Love Abundantly in Special Needs Families. The chapter explores two child development concepts that can help parents better understand how to express love to their kids with disabilities and special needs.

The first concept is attachment categories. Attachment equals love in mental health care jargon. Professionals in the field have identified 4 attachment categories to identify how very young children learn to love, or bond, with primary caregivers.  

Secure attachment happens when the child has consistent, emotionally appropriate interactions with parents. Secure children feel empowered to explore the world as they develop and grow.

Avoidant attachment occurs when parents are unavailable or rejecting. As a result, children also avoid closeness and emotional attachment.

Anxious attachment is the result of inconsistent interactions with parents. Lack of consistency causes children to exhibit anxious and unreliable behaviors.

Disorganized attachment happens when contact with parents is so inconsistent and unpredictable that children are repeatedly disoriented or terrified. Their lives are so chaotic and their needs are so frequently unmet that they are unable to rely on or attach to anyone.

Many children with special needs develop avoidant, anxious, or disorganized attachment. Reasons include early, invasive medical treatment, separation from birth mother for medical treatment or adoption, repeated trauma, extreme sensory sensitivity, or unpredictable medical conditions like seizure disorders. Parents can use the love languages to fill these kids’ with the security they didn’t receive earlier.

The second concept is stages of cognitive development. This is a term used by educational psychologists to describe how thinking and learning develops in children. All kids go through these 4 stages in the same order, but not always at the same speed.

The sensorimotor stage runs roughly from birth to age 2. In this stage, children learn about the world by manipulating and observing physical objects.

In the pre-operational stage goes from age 2 to 7. At this age, children start using symbols while thinking, but they still need to manipulate symbols. They also asked lots of “why” questions and are very curious.

The concrete operational stage runs from about age 7 through age 11. This is where children begin to think logically in their heads. They can’t apply what they’ve experienced to unfamiliar situations because they can’t yet think abstractly.

The formal operational stage can start at age 11 and runs through adulthood. Some adults never reach this stage, which can only be achieved in an enriched and intentional environment. Those who reach this stage can think abstractly about things they haven’t personally experienced.

Many children with developmental delays or attachment issues progress through these stages slowly. By identifying what stage children are at, parents can speak their love languages in developmentally appropriate ways. 

Chapter 4 of Sharing Love Abundantly is filled with the stories of families who have adapted and used the love languages with their kids who have special needs and disabilities. Assuring our children that they are loved is what parenting is all about!

Other articles in this series:

The Love Languages and Special Needs Families: A Good Combination

Basic Love Language Concepts to Ease Stress and Increase Joy in Caregiving Families

Threats to Caregiving Marriages and How To Fight Them 

Fostering Communication and Connection Between Caregiving Parents 

Determining the Love Language of a Child with Special Needs or a Disability 

Ways to Speak Words of Affirmation and Quality Time to Kids with Special Needs

Speaking Healthy Physical Touch to Kids with Special Needs

Using the Love Languages with Siblings of Kids with Special Needs and Disabilities 

Extended Family Members Can Use the Love Languages to Encourage Caregiving Parents

Communicating Your Child’s Love Language to Medical Professionals

Communicating Your Child’s Love Language to Educators 

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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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EA/TEF Is All in the Family for this Mother and Son

EA/TEF Is All in the Family for this Mother and Son

by | Feb 1, 2021 | Different Dream, How-Tos

EA/TEF Is All in the Family for this Mother and Son

EA/TEF is all in the family for this mother and son. Mom Corrin Ponte, who was born with this rare condition and whose son has it too, recounts both stories. From her unique vantage point, she also shares her best tips for parents raising their own EA/TEF babies.

I was transferred to Stanford NICU at 2 days old where scans showed a connection between the trachea and the distal esophagus and proximal esophagus ending in a blind pouch–EA/TEF. I had surgery to repair the defect and was discharged home at 3 weeks of age. 

After a few weeks at home, I stopped breathing and turned blue. My mom pounded on the neighbor’s door. No answer. A teenager parked nearby noticed and performed CPR, resuscitating me. 

Back at Stanford they found the repaired site had narrowed to the size of a pinhole. I spent the next 2 months in the hospital with life-threatening episodes. Eventually, they inserted a g-tube (feeding tube) so I could go home. 

Fast forward to adulthood and my first pregnancy.

Between weeks 18-20 I had a routine ultrasound. The technician saw a tiny “stomach bubble” and had the radiologist take a look. I was referred to a perinatologist who said, “it’s probably fine; come back in 8 weeks.”

Knowing my own history, I wasn’t comfortable with the wait and self-refer to University of Washington perinatology. They saw a tiny stomach bubble and increased amniotic fluid and said there was a 90% + chance that my baby had EA/TEF. I left the appointment feeling confident that my child would be born with the same defect and that he would come home after a successful surgical repair or with a feeding tube. After all, EA/TEF is all in the family for me.

As I was a nurse, I requested my medical records from birth. Soon a 4-inch stack of records arrived! I poured through them. They gave me a glimmer of what my non-medical parents dealt with and gave me the reassurance that I needed to prepare for my son.

Mason was delivered via c-section at 35 weeks. He was evaluated and confirmed to have EA/TEF and Down syndrome. That was a complete surprise! He was transferred to Seattle Children’s Hospital within 4 hours. His surgery was the next day and was successful! He spent 2 weeks in the NICU and was discharged after 3 weeks – including modified feedings and a wedge to sleep on. 

The first 12 years of his life were filled with appointments, therapy, hospitalizations, illnesses, and surgeries. He is now 18 and doing much better. Because EA/TEF is all in the family for us, I created these tips to help other parents.

  • Take a breath! You can do it!
  • Make a binder to organize notes about medication, treatments, and doctors. 
  • Create an “About Me” handout for school personnel.
  • Create a “babysitting guide” with important health information for emergency medical situations and tips for dealing with stuck food.
  • Encourage caregivers and family to learn CPR and Heimlich.
  • Have a list of banned foods that are choking hazards for your child.
  • Work with your child to learn his or her choking hazards.
  • Send only safe foods to school. 
  • Work with your child’s school nurse to create a 504, Individual Health Plan, or Emergency Care Plan. If your child needs adult support during school, make sure it’s written and make sure back-up staff are trained. Remember parties/field trips/special events. 
  • Provide information from TOFS and EATEF: ‘Tracheomalacia and the TOF cough’, ‘Chest infections and wheeze’, and ‘A Guide for Teachers and Caregivers’ for school nurses and educators.
  • Create an “About Me” presentation for your child’s class. Explain why your child has eating restrictions, what those restrictions are, and go over typical EA/TEF sounds like noisy breathing and a barky laugh.

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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Corrin Ponte lives in Washington state with her two children: Lauren and Mason and their pets. Aside from TEF/EA, Mason also has Down syndrome, dysphagia, tracheomalacia, asthma, hypothyroidism, and obstructive sleep apnea. Corrin has been a nurse 24 years and received her Master of Science in Nursing Education in 2019. She has been published in ‘Individualized Healthcare Plans for the School Nurse’ (2017) and in ‘Immunology and Allergy Clinics of North America: Comprehensive Care in the Allergy/Asthma office’ (1999). She also served as a board member for the IDEA project which provides interactive disability education awareness at schools. Corrin works as a school nurse and helps integrates students with complex medical issues and students with disabilities.

Author Jolene Philo

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Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

by | Jan 14, 2021 | Different Dream, Encouragement, How-Tos

Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

Is it easier or worse to be an EA/TEF parent in the time of COVID?  Guest blogger and EA/TEF mom Nanette Lerner outlines her answer to the question and encourages other parents in today’s post.

If you’re the parent of an EA/TEF kid, chances are you were calculating the risks of germy situations way, way before COVID-19 entered the picture. These days, the rest of the world seems to be catching up to our germaphobia.  Because it’s clear that everyone’s lives depend on it.

Back when our TEF kid was little and every cold seemed to turn into a much bigger respiratory event, germs were always on my mind.  If I saw a kid on the playground with the slightest runny nose, we moved. Ball pits were evil harbingers of unknown viruses. Jumpy houses—particularly the kind that zipped shut—caused major anxiety, since there was no telling if our TEF kid was being coughed or sneezed on by other kids. If you’ve ever sat in the middle of the night with your hand on your kid’s chest to count your kid’s respiratory rate (without a pulse oximeter) determining whether or not you should wrap him up and head to the ER, then you understand why we were so paranoid.

Flash forward to January 2021 when everyone knows what a pulse oximeter is, so much so that they are impossible to find in your local pharmacy. Hand sanitizer is so much a part of the norm that you literally can’t find it in most stores. Lysol and Clorox wipes are worth more than gold.

So is it easier or worse to be an EA/TEF parent in the time of COVID when everyone is so much more germ conscious?

The Good News

In these times, no one is going to try to touch your EA/TEF baby’s hand. Or stick their face into his stroller and breathe all over your kid. Since everyone is mostly staying home right now, there is less opportunity for social mingling and germ mingling, too.

The Bad News

We’re in the midst of a global pandemic involving a disease that includes respiratory symptoms. Everyone is highly sensitive to anyone coughing. But the sound of an EA/TEF kids cough reverberates like thunder and gets evil looks anywhere you go. That’s only going to get worse, though nowadays, your kid is coughing while wearing a mask

The Emergency Room News

We frequently had to take our little guy to the ER when he was little; so much so that we kept a “go bag” packed and ready since he was often admitted. The emergency room question mark is something that all parents (even non-TEF parents) are battling right now, since no one ever really wants to go—but these days, even less so. For one thing, you may not want to enter an ER and expose your little one to potential germs unless it is absolutely necessary.  And you don’t want to take up a spot that could go to a COVID patient in desperate need of attention.

There’s also the question of what happens if our TEF kids get COVID.  We don’t know if it will be worse for them, and we don’t want to find out.  

So Is It Easier or Worse To Be an EA/TEF Parent in the Time of COVID?

If there is any silver lining at all to COVID—and there isn’t much—it’s that the world will finally be more conscious of germs than they ever were before. As EA/TEF families, we have lots of experience with social distancing already, so we keep practicing that. 

I hope that people continue to wash hands religiously, use hand sanitizer, and are aware of how they are feeling before they go anywhere. I don’t want everyone to become germ freaks. But I do appreciate people who take a moment to consider how their health can greatly impact the health of others.

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.

Nanette Lerner

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Nanette Lerner writes commercials, social posts, print ads and young adult fiction, sometimes simultaneously.  She lives in New Jersey with her husband, kids and fluffy dog.

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We Can Role Model How To Process Feelings in a Healthy Way

We Can Role Model How To Process Feelings in a Healthy Way

by | Sep 8, 2020 | Different Dream, How-Tos

We Can Role Model How To Process Feelings in a Healthy Way

We can role model how to process feelings in a healthy way to our kids with special needs and disabilities says guest blogger Laura Spiegel. In this post she explains both how and why to make this practice part of every day life.

“I like your headband,” my daughter says out of the blue, bike helmet in hand. “And your purple pants. You look like Superwoman!”

“I feel like Superwoman today,” I smile. “I’m strong, and I can do hard things.”

My daughter nods and zooms down the driveway. A year ago, she would have walked her bike down the small slope with caution. Now she’s learning to ride with no hands.

Hours later, we sit at the dinner table and butter our corn. Kernels spray left and right as my daughter relishes her first summer with two big front teeth.

“Why do you look like that?” she asks as she munches on another row.

“I guess I’m feeling a little sad,” I respond.

“’About the homeless?” she prompts.

“Um, no… But now that you mention it, I feel sad about the homeless too.”

A little later, I approach my daughter about doing her respiratory therapy for her cystic fibrosis.

She sighs. “I wish I didn’t have to do mask and vest today,” she remarks. “It’s so hard.”

And it is. Her twice daily respiratory therapy is an essential part of her lung health. But it’s also a nuisance and a reminder of the one part of her that’s different from her friends.

“You’re right. It is hard,” I reply. “And you know what? When you do it, you are reminding yourself that you can do hard things.”

She pauses and smiles, then stretches her arms into her vest. She says nothing, but I can tell that this has resonated. She can do hard things.

It’s late, and I’m tucking my daughter into bed. “I feel left out,” she admits as she pulls the covers up tight. She’s lonely because I let her brother sleep in my bed for the last time…again.

“I get it,” I reply. “Sometimes I feel left out too.”

She yawns and closes her eyes. It’s late, and she’s too tired to argue.

Where am I going with this?

I want you to know that we can role model how to process feelings in a healthy way to our kids. Sometimes we feel like we have to be stoic for our kids. Impervious to the demands of everyday life, a smile on our face always. When our kids see our frowns and ask what’s wrong, we often sweep them under the rug with a “Nothing” or “It’s fine” or “Don’t worry about it.”

We parents of kids with special medical, developmental, or behavioral health care needs don’t want to burden our kids with our worries, our concerns, our fears. We believe that our bravery and strength give our kids comfort – and often times, it does.

Our kids need to feel secure and safe, especially when they are young. They don’t need us to dump the weight of the world on their shoulders.

But sometimes, it is okay to let our guard down in an age-appropriate way. To let our kids know that even though we are adults, we experience ups and downs too.

Just as we role model what it looks like to work hard or to be a good friend, we can role model how to process feelings in a healthy way.

When we express our own feelings and label them, we encourage our kids to recognize feelings in themselves and in others. We also help to cultivate a sense of emotional safety – one that allows our kids to be honest with themselves – and to trust that their thoughts and feelings will be treated with the respect they deserve.

As our kids with special health care needs grow, an awareness of their emotions can help them communicate where they may need additional support. For many of our kids, this will be an especially critical skill as they take ownership of communicating with physicians, asking questions of their care teams, and advocating for their needs.

I’ll be the first to admit that I don’t always do this well. I’m a pro at bottling things up and waiting for the proverbial straw to break the camel’s back and blow my cover. I’m calm, I’m calm, I’m calm, I’m calm, and then I explode!

I’m trying to get better at this. Taking time for myself during the day, even if it’s just ten minutes here or there, is helpful. So is practicing gratitude. And when I lose my cool in front of my kids, I try to take the time to apologize to them.

It’s okay to feel frustration or anger, but I can do a better job of demonstrating what it looks like to process through these feelings in a healthy way.

It’s morning again, and I’m listening to the birds call out their daily greeting. More flowers have bloomed, and I can’t wait to show them to my daughter.

It’s Sunday.

I’m excited for what the day will bring.

I feel happy.

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.

Author Jolene Philo

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Spread Good Not Germs During the COVID-19 Outbreak!

Spread Good Not Germs During the COVID-19 Outbreak!

by | Apr 27, 2020 | Different Dream, How-Tos

Caregiving parents have been uniquely prepared to help others during the coronavirus outbreak. Here are 6 ways they can spread good, not germs in this uncertain time.

Spread good, not germs has become my rallying cry for the duration of the COVID-19 outbreak. You may be wondering what good you have to offer when your days have been devoted to caring for your child with special needs and disabilities for a good long time.

As it turns out, your role as a caregiver has prepared you for the COVID-19 outbreak.

You have already completed crash courses in infection control, social distancing, dealing with doctors and insurance companies on the phone, family togetherness, homework supervision, virtual relationships, and more. You’ve been doing this stuff so long, it’s second nature to you. Therefore, you have expertise to share with families struggling to adapt to a new normal.

Even so, you may not realize what you have to offer.

I’d like to point out 6 ways your caregiving experience has prepared to you spread good, not germs until this COVID-19 business settles down.

  1. Spread kindness. Many times since COVID-19 hit the scene, my patience has been strained by people complaining about how hard social distancing is. I’d like to tell them to put on their big girl panties and stop whining. But then I remember how much the kindness of others meant after our son’s diagnosis–encouraging cards, offers of help, money given. The list goes on and on. Our country’s present circumstances are an opportunity for caregiving families to control our natural instincts and choose to pay forward the kindness we’ve been shown.

To read the rest of this post about how to spread good, not germs, visit Key Ministry’s blog for parents of kids with special needs and disabilities.

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Turning Coronavirus Lemons Into Lemonade

Turning Coronavirus Lemons Into Lemonade

by | Apr 23, 2020 | Different Dream, How-Tos

Turning Coronavirus Lemons Into Lemonade

Turning coronavirus lemons into lemonade is no easy task. All over the globe too many are dying, hospitals and their workers are struggling, economies are faltering, incomes are shrinking, and people are trying to make sense of constantly changing, unbelievable circumstances. At least once a day, all the coronavirus doom and gloom pushes the hamster wheel of anxiety in my brain into overdrive.

Can you relate?

I had to do something to regain my mental balance, and so began a daily practice I like to to call turning coronavirus lemons into lemonade. The title may sound sort of Pollyanna to you, like I’m downplaying the severity of the pandemic and its effects, but that is not the case. Rather, my new practice is an attempt to shift the tart bitterness of daily life into something to digest and feed my mind and soul. Here’s a closer look at how I’ve been turning coronavirus lemons into lemonade.

Lemon #1 to Lemonade: My husband is being trained to care for COVID-19 ICU patients

My husband is 64. He is very fit and healthy, but he has an underlying kidney condition. He hasn’t worked in ICU for over 15 years, but he has a servant heart and doesn’t hesitate to do what’s needed. This lemon has the potential to send my brain into high gear several times a day. To stop the spinning, I whisper a prayer of gratitude because my husband has a job, he has job security, and he has a steady paycheck. That realization is sweet comfort to my soul though my heart aches for those who are struggling financially.

Lemon #2 to Lemonade: All my spring and summer speaking engagements have been cancelled.

I look forward to speaking at special needs conferences all year long. They’re the place where I meet parents face-to-face and reconnect with colleagues. Also, my ministry is financed primarily through speaking fees and book sales at spring and summer events. But speaking events don’t leave much time for writing. So instead of worrying about the money I’m not earning and the people I’m not seeing, I have decided to be thankful for the opportunity to work on a new writing project I’ve had to put off for years because of lack of time.

Lemon #3 to Lemonade: My 91-year-old mother can’t have visitors in her memory care unit.

She’s cognizant enough to know why we can’t see her, but she’s used to daily visits from us and is getting very lonely. She gets 2-3 calls a day from her children and grandchildren, along with cards, letters, and window visits when the weather’s decent. Rather than worry about whether or not she’s brushing her teeth or putting on clean clothes, both of which I remind her to do in our daily calls, I choose to delight in how Mom ends those calls. She has never been one for verbal or physical expressions of love. But for the first time in her life, she says, “I love you, Jo. Thanks for calling,” before she hangs up.

Lemon #4 to Lemonade: Cloth masks are uncomfortable.

Does anyone like them? I think not. On the other hand, I am grateful for a talented seamstress sister who made and mailed masks for everyone in our family. My sister says “I love you” more than our mother does, but it’s nice to have tangible proof of the bond between us and to have masks when other people are scrambling to find them.

Lemon #5 to Lemonade: Our house is noisy with kids at home all day long.

My husband and I live intergenerationally with our daughter, her husband, and their 2 kids. Until mid-March the 4-year-old was in afternoon preschool. The silence we adults enjoyed during that time while his 2-year-old sister took a nap is no more. When their boisterousness makes my ears hurt, I think of how vast the silence would be if was alone each day while my husband was caring for COVID patients. What a mercy the distraction of grandchildren is!

Lemon #6 to Lemonade: Our grandson couldn’t have a birthday party.

My heart broke when my grandson said, “I don’t like that this disease means I can’t invite friends for my birthday.” I started to dwell on how unfair that was to an innocent little boy, but that made me feel helpless. Instead, I thought about what I could do, which was to invite his extended family to a virtual party so they could wish him happy birthday. He was jazzed to be the center of attention and loved every minute of it.

Lemon #7 to Lemonade: Sheltering in place is becoming wearisome.

Staying home to avoid germs is tiring, and not knowing when the present state of affairs will end is exhausting. So is hand washing for 20 seconds, live streaming church, and watching our supply of toilet paper shrink. However each inconvenience and a myriad of COVID-19 sourness makes me anticipate the blessed hope and appearing of the glory of our great God and Savior, Christ Jesus (Titus 2:13), who will one day make all things right. 

When I consider Christ’s eternal sweetness yet to come, my hamster wheel of anxiety stops spinning. My mind and soul find rest. I hope the same is true for you, too.

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 both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com Jolene and her husband live in central Iowa.

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