4 Special Needs Parenting Reminders from a Deranged Robin

4 Special Needs Parenting Reminders from a Deranged Robin

by | May 15, 2019 | Different Dream, How-Tos, Special Needs Parenting

4 Special Needs Parenting Reminders from a Deranged Robin

Special needs parenting reminders came thick and fast when we were raising a son with major medical issues. But he overcame his health challenges, became an adult, and flew the coop long ago. These days, special needs parenting reminders arrive in strange ways.

One example is the deranged robin who appeared on our deck as winter surrendered to spring. One morning I heard a thumping sound, like someone was tenderizing meat on the kitchen counter. But none of the cooks who live at our house were around. I shrugged, arranged my computer and materials at the table in front of the glass doors leading to our deck, and began to write. A few words into my first sentence, the thumping began again. I glanced up to see a robin smack its beak on the window glass, fall onto the deck, shake its ruffled feathers, and charge at the door again. And again. And again. All morning long.

From that day on, the deranged robin showed up as soon as the sun hit the glass doors. It attacked the door until the sun moved and the eaves cast a shadow on the glass. Between its first appearance and the solution that finally sent it packing over a week later, that deranged robin provided several special needs parenting reminders I’d like to pass along to you.

Reminder #1: The Simplest Solution Is Often Best

To read the rest of this post, please visit the blog for parents at the Hope Anew website.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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That Child Could Have Been Me or You

That Child Could Have Been Me or You

by | Mar 25, 2019 | Different Dream, How-Tos, Special Needs Parenting

That Child Could Have Been Me or You

That child could have been me, I thought as I read through one of the responses to my survey about stress and compassion fatigue in caregivers. The respondent said her 60-year-old child lived with intellectual delays caused by an untreated Rh factor blood disorder. The mother also said that she is still her child’s primary caregiver. With a gasp, I realized the implication of what I had just read.

I am 62.
I was born with Rh factor blood disorder shortly after the disease was discovered.
My disease was detected too late for newly developed treatment methods.
The doctor said my parents would have to wait and see how the disease would affect my development.
Most certainly, that child could have been me.
A chill ran down my spine.

My eyes filled with tears as I imagined this elderly mother, who has to be in her late 70s at the youngest, taking care of her aging child. She’s been a caregiver for 60 years, and she must be wondering who will care for her child when she no longer can.

I contemplated how Rh factor affected my life. For years I struggled with low muscle tone and poor coordination. I shunned physical sports and became a voracious reader, a necessary first step in becoming a writer. The direct line between Rh factor and my present life renewed my determination to redeem the time God has given me. (Ephesians 5:16)

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

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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4 Strategies to Create a Sense of Control for Kids with Special Needs

4 Strategies to Create a Sense of Control for Kids with Special Needs

by | Feb 14, 2019 | Different Dream, How-Tos, Special Needs Parenting

4 Strategies to Create a Sense of Control for Kids with Special Needs

A sense of control is essential to kids. My grandson, who will soon turn 4 and beginning to outgrow daily napping, demonstrated his need for control this afternoon. His mother announced it was nap time, and he threw what can only be described as a tantrum. He’s really good at tantrums.

As his mother carried him to bed, she said, “You have to lay down and rest. You can get up after you wake up from your nap, or until after you lay down quietly and listen to two story time podcast episodes.”

The tantrum ended, perhaps because his sense of control was met when his mother gave him the power to choose between two options. The options were developmentally and age-appropriate because he doesn’t need to nap every day, though he does need to rest.

Medical conditions, pain issues, behavioral challenges, and developmental delays can make finding ways to offer control tricky. But if a sense of control is essential to all kids, then it’s essential for kids with special needs, and we must offer them appropriate choices, too. Here are 4 ways to do it.

  1. Watch what you say. Kids with special needs have more medical appointments, therapy sessions, and hospital stays than most. When it’s time for an appointment, phrase questions so the child has two viable options. Don’t say “Are you ready to go?” because if the child’s answer is, “No,” he still has to go.
  2. Provide choices when life is tough. Hospital stays, medical procedures, and therapy sessions are not fun. Parents may not be able to make them fun, but we can meet their need for control when stuff gets tough. We can give them a choice between red and orange popsicles after surgery, let them be in charge of the remote control during a hospital stay, or allow them to pack a duffle with toys and games to play with in the waiting room or during day-long drug infusions.
  3. Offer positive reward choices. This strategy is similar to the previous one. It gives kids something to look forward to after completing something difficult. Let your child choose something fun to do after an uncomfortable medical procedure, a grueling therapy session, or missing time with friends. You can set a time, distance, and dollar limit. Other than that, the sky’s the limit. A few suggestions are ice cream, choosing a trinket from the Dollar Store or Target dollar bin, thrift store shopping, a new video game, a trip to the library, laser tag, or whatever your child enjoys most.
  4. Grow your ability to offer appropriate choices. Parenting with Love and Logic by Foster Cline and Jim Fay is packed with ideas about how to offer choices to kids. They have other titles specific to early childhood and teens. Best of all, Foster Cline teamed up with Lisa Greene to write Parenting Children with Health Issues. I implemented many of their ideas while raising our children and during my career as an educator and found them to be effective.

By offering choices to kids with special needs, we not only create a sense of control for them, they become better choice makers—a skill they need to practice often on the road to adulthood.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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The Three Friends Every Caregiver Needs

The Three Friends Every Caregiver Needs

by | Feb 13, 2019 | Different Dream, How-Tos, Special Needs Parenting

The Three Friends Every Caregiver Needs

Do you know what friends every caregiver needs? Today’s guest blogger and special needs mom Lillian Flakes discovered the ones she needed at the beginning of her parenting journey. Today she describes the three friends every caregiver needs, the ones she’s grateful are part of her life.

For the last 13 years, I addressed the medical and cognitive challenges for my daughter, Catherine. She was born with a congenital heart defect and has Down syndrome. After her first surgery, she fell into a stage where she was described as “failure to thrive” and required frequent emergency visits to the hospital, numerous medications and round-the-clock-care. My daily challenges were difficult. Quite frankly, I often felt lonely. I could not have made it through without the help of dear friends.

Since those early days, people shared with me about a close friend or relative who is a primary caregiver and sought my advice on how to help them. I always tell them to help in a way they know they can consistently deliver. From my experiences, I’ve learned that primary caregivers need individuals that fit into certain categories. Here are a few that have served me well over time.

 The Prayer Warrior

This person stands in the gap praying constantly for a caregiving friend. My prayer warrior consistently contacted me through text or email three to four times a week. She always asked, “How can I pray for you and your family today?” She would also text scripture or an inspirational broadcast to lift me up. It was helpful to know someone could speak for me in prayer when I sometimes found it difficult to speak for myself.

 The Helper

Everyone wants to help, but this person hits just the right note. My helper picked up medication, transported children, brought food, and did anything that was needed. While my daughter was in the hospital, my helper contacted me early in the morning before doctor rounds to check on my needs. She would often come to the hospital shortly before visiting hours ended and just sit next to me while I debriefed her on the day. Many times she took notes on what I thought I needed and showed up with it the next night. Her constant presence was helpful as she was able to fill in on many fronts.

 The Listener

Every so often I still feel like I am walking in a fog among others who seem to have light but not enough light to shine through my challenges. Sometimes that light comes into my life as a listening ear. No judgment, no advice. Just listening to me and letting me pour it all out. My listener may not understand all the details of what I face, but she’s there to squeeze my hand and, in some cases, allow me to cry out my frustration in a safe space. This friend allows me to visit the pity room and stays there with me until I am ready and strong enough to silently nudge me back into real life.

As you look at primary caregivers and see them in need, remember your consistent hand will always work to help them. Who knows? Your help can come at just the right time just as it did for me.

 

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Lillian is a wife, mother, primary caregiver advocate, and scientist. She is the proud mom of two girls, the youngest with Down syndrome. Her youngest daughter had a heart defect and other health issues that required 92 days of hospitalization her first year of life. Lillian is a natural problem solver and understands the challenges every caregiver can face with the overwhelming tasks of managing hospitalizations, numerous doctor appointments, medications, insurance claims along with balancing the care of family. As a key component of her blog, Beyond the Waiting Room, she provides a peek into her personal challenges along with resources, tools, new technology and inspiration. In addition, she often speaks to groups in the medical field about CARE (Compassion, Action, Respect and Education) the cornerstone of treatment for all patients. 

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How To Demystify Special Needs at School

How To Demystify Special Needs at School

by | Dec 6, 2018 | Different Dream, How-Tos, School/Education, Special Needs Parenting

How To Demystify Special Needs at School

I am grateful to my colleagues who taught me how to demystify special needs at school. A special education teacher in our building and the guidance counselor wanted to mainstream a child with developmental delays into my third classroom for subjects like handwriting and music. I was game, but unsure of how to start.

“Tell your students what’s going on,” the special education teacher advised. “Help them get to know Kendra. I’ll talk to her parents after school about how much you can say.”

After the phone call, she reported back. “Her parents are willing to talk to your class and answer their questions. They said kids will make up their own answers if they aren’t given any information. And that’s not good.”

Kendra’s parents spent a half hour telling my students about Kendra’s diagnosis and answering the children’s questions. They wanted to know about her favorite things, how to talk and play with her, and what to do when she behaved in ways they didn’t understand. The foundation laid that day made my students more caring and friendly toward Kendra, a valuable lesson for all of them.

I learned a valuable lesson about how to demystify special needs at school that day, too. I used what I learned repeatedly during my teaching career to clear up misconceptions children had about their classmates with special needs–from juvenile diabetes to developmental delays, from cerebral palsy to autism and more. The suggestions below can help you do the same.

  1. Enlist a colleague’s support. Ask a special education teacher, the guidance counselor, or building principal to assist you. They can help approach parents or do one on one activities with a child with special needs who doesn’t want to be part of the discussion.
  2. Ask parents for permission and information. Parents may offer to be directly involved in the discussion as Kendra’s parents did. Others may want you to lead it. In that case, ask what they want to be shared about the child’s disability. If you are just getting to know the child, gather information to acquaint classmates with the whole person, not just the disability.
  3. Give children the opportunity to ask questions. Doing so makes kids part of the discussion and provides you with insight from their perspective. They may bring up worries or past history you don’t know. Their questions can be a valuable source of information for you.
  4. Provide practical suggestions. Give children ideas of how to strike up a conversation, how to include children in wheelchairs on the playground, what to say to students from other classrooms who ask questions, what to do in an emergency, and when to report behaviors of children with or without special needs. Do some role play if you have time. The better equipped children are, the more likely they are to empathize and be compassionate friends.
  5. Follow up and provide feedback. A month or so after the initial discussion, check back with all your students. Ask how things are going for typical kids and those with special needs. You can also ask other building faculty and staff for their observations to get a well-rounded perspective. Praise children for what they’re doing well and problem-solve challenges as a group. When children know they are accountable, appreciated, and supported by the adults in their world, they will rise to the occasion.

The more we do to demystify special needs at school when children are young, the more likely they are to embrace all their peers wherever they meet—in the community, at church, and eventually in the workplace and the wider world.

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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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Special Needs Parenting Time Suckers and How To Avoid Them

Special Needs Parenting Time Suckers and How To Avoid Them

by | Nov 14, 2018 | Different Dream, How-Tos, Special Needs Parenting

Special Needs Parenting Time Suckers and How To Avoid Them

Special needs parenting time suckers can drain caregivers of energy, motivation, and time with typically developing children. Guest blogger Kimberly Drew is here with 6 strategies she uses to neutralize them so she can spend her time building relationships with all the children in her family.

Special Needs Parenting Time Suckers and How To Avoid Them

Special needs parenting time suckers are one of the greatest challenges in my life as a caregiver. For instance, my daughter’s diaper leaked all over the floor this evening. When I was supposed to be helping my son with homework I spent twenty minutes cleaning the mess and bathing my daughter. More distressing are medical emergencies and illnesses, but all of them are exhausting and unwelcome interruptions that start to add up.

The time required to physically, intellectually, and emotionally to care for a child—going to appointments, financial planning for medical expenses, bathing, feeding, and managing a child’s emotions if the disability has a behavioral component—is a huge challenge. My life has become one of service to my daughters with special needs. This is no small calling requiring an enormous amount of time to do it well. Without my care my daughters would die. Even so, there must be a healthy balance between caring for a disabled child and caring for typically-developing children. Each child entrusted to us is a gift from God and deserves our time. Here are 6 strategies I keep in mind to avoid falling into the trap of special needs parenting time suckers that take away time from my other children.

Strategy #1

A promise is a promise, so avoid making promises to spend time with a child and then cancel because daily routines are making you tired. A medical emergency falls into a different category that requires your family to be flexible, but normal routines aren’t an excuse to bail.

Strategy #2

Make arrangements for someone else to care for your child with special needs so you can have one on one time with your typically-developing children. An hour here and there can create memories that mean something.

Strategy #3

Make sure at least one parent is at your children’s sporting or hobby events. We don’t want our kids to look back and say, “Mom never came to my basketball games because she was always with my brother.” Sharing the load with your spouse or another close family member makes a difference.

Strategy #4

Don’t allow gifts, money, or anything else become a substitute for your presence in a child’s life.  A child’s character is shaped by the challenges that accompany having a sibling with disabilities. Don’t compromise the shaping of character by throwing gifts at a child, and don’t sabotage it through neglect. 

Strategy #5

Quality time may not require equal time. The quality of time spent with typical siblings may not add up to the same number of hours spent with a child who has disabilities. But it may feel like the same amount of time to both children, and that’s what matters.

Strategy #6

Parents make intentional plans for their child with disabilities–meds, appointments, baths, transportation, and more. Plan intentionally for typical children too. Make sure to put their names and activities on your calendar.

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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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have three amazing kids on earth (Abigail, Jayden, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s  desire to write. In addition to being a stay at home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

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