5 Ways Special Needs Parenting and Elder Care Are Alike

5 Ways Special Needs Parenting and Elder Care Are Alike

5 Ways Special Needs Parenting and Elder Care Are Alike

For several months, my life has been more immersed in elder care than special needs parenting. And do you what to know the simple truth I’ve learned in these intense days and weeks of caring for my mother? It’s this: Special needs parenting and elder care are more alike than different. Here are five ways they are strikingly similar.

Similarity #1

Special needs parenting and elder care involve considerable contact with bodily fluids. I’ve never been a fan of frequent contact with bodily fluids, my own included. Even when my babies were sweet and cute, changing their diapers required a constant flow of self-talk to get through the task. At least they didn’t accuse me of mumbling like Mom does now and then.

Similarity #2

Special needs parenting and elder care require stellar detective skills.  Skills like watching for clues when the person being cared for can’t use words to tell you what they need. Or looking for patterns to determine cause and effect and to accurately predict what might happen next. Or, when speech is possible, learning to ask questions that will elicit the information needed.

Similarity #3

Special needs parenting and elder care require perseverance. The kind of perseverance caregivers need to cut through red tape, to fill out government and insurance forms, to make follow up phone calls, to fill out appeal forms when government services and insurance reimbursement is denied, and to create filing systems for organizing reams of paperwork.

Similarity #4

Special needs parenting and elder care means holding lots of stuff. Both types of caregivers have to hold medical equipment, tempers, half-chewed bits of food, and tongues. But most of all, both kinds of caregivers hold the hands of those we love whenever they need a reassuring touch.

Similarity #5

Special needs parenting and elder care are exercises in putting others first. The moment you sit down to eat for the first time in 6 hours. As soon as you settle down to soak in a hot tub. When the in-home care provider doesn’t arrive so you can go on a long-anticipated shopping break.

The same thing keeps both types of caregivers going day after day, hour after hour, sleepless night after sleepless night. We keep going because no one loves our children and our aging parents like we do. And if we who love them don’t put them first, who will?

Other Similarities Between Special Needs Parenting and Elder Care

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

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How to Create a Realistic Caregiving Routine

How to Create a Realistic Caregiving Routine

How to Create a Realistic Caregiving Routine

Are you caring for a new baby, a child with special needs, a spouse with disabilities, or an aging parent? How would you describe your caregiving routine?

Stuck in a rut?
Anything to get by?
Fly by the seat of your pants?
One step above total chaos?
All of the above?

Yeah, I know how you feel. Because that’s what my routine felt like when my aging mother stayed with us for a month recently. One day, my normal, writing routine was there. The next day, Mom’s needs pulled the rug out from under that routine. She didn’t get her meds on schedule. Meals were late. Appointments were missed. My writing output dwindled to nothing. By the end of the first week, I was a basket case and our home felt one step away from total chaos. Things stayed that way until I created a routine to meet both our needs.

How To Create a Realistic Caregiving Routine

How did that routine come to be? Basically, by asking these questions:

  1. What does Mom need?
  2. What do I need?
  3. What has to get done?
  4. What can be abandoned?
  5. What requires help to be accomplished?
  6. Who can help accomplish it?

The answers to those questions provided a way to reorder my priorities and time use. It wasn’t easy…in fact, it was hard to say good-bye to some of the month’s writing goals. And it took a while before my husband truly understood how he could support the new routine and how much help Mom needed from both of us.

What’s Your Caregiving Routine?

Do you have a caregiving routine? How did it come into being? What would you like to change about your routine? What caregiving resources have you found useful? Share your wisdom in the comment box.

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 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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Special Needs Acceptance, Not Judgement

Special Needs Acceptance, Not Judgement

Special Needs Acceptance, Not Judgement

Special needs acceptance isn’t always easy to come by, as parents of kids with special needs know. Guest blogger Maggi Gale is here to describe her epic fail at offering special needs acceptance to a mother she glimpsed during her daughter’s hospital visit.

Special Needs Acceptance, Not Judgement

I noticed her as we entered the hospital. It was her determined cheerfulness that struck me, merrily chatting to her son as they paraded down the corridor. Then I spotted that he was on a tricycle. It had a tall flag attached by which she guided him. My first thought – although I’m ashamed of it now–was that he was indulged. Why allow your son to ride a tricycle inside the hospital? After all he looked to be about 4 years old.

I was new to this world of special needs parenting.

It happened when we were called into a room for my daughter’s height and weight to be checked at the same time as the lady. Behind averted eyes I couldn’t help but notice as she carefully lifted her son out of his tricycle. To my shock I saw he was unable to walk or stand.

How quick I had been to judge, to privately label this boy as “indulged.” With people like me around, no wonder the lady had developed her attitude of determined cheerfulness and deliberate focus on her son, seemingly blocking out the rest of the world.

Although I never saw her again, I was to think of this lady many times over the coming years. What had she experienced? Could it be that the purposeful attitude had become her suit of armor from misunderstandings and insensitive remarks?

My daughter’s condition was to be misunderstood on many occasions. Since EA/TEF affects only one in 3500 babies, most people we knew were unaware of it. And some of the comments we were to receive over the next years would shoot like darts to my heart until it bled.

They ranged from well-meant but foolish medical advice, through rude comments about her distinctive cough, to judgmental statements about her swallowing difficulties. There were also the looks between other mothers which said, “Is this a case of Munchausen syndrome by proxy?” when my explanations weren’t accepted.

Was it actually my responsibility to prove that Lois had EA/TEF?
If people didn’t understand, did it matter?
How could I be thick skinned enough to shrug off the ignorant comment, without shrugging off the person who made the comment?

And why did these darts hit me at the most unexpected times? At a farewell party in front of 20 of my husband’s colleagues, at a children’s birthday party, by the beach…so many casual but insensitive remarks brought me to tears.

So I developed my own suit of armor, my own purposeful attitude and deliberate focus. My armor was knowledge about my daughter’s condition, and faith that God would somehow get us through this. The armor wasn’t without its holes. It’s hard to wear armor when you haven’t slept. And sometimes you don’t put it on when you don’t think you’ll need it.

But when I did wear it, it made world of difference.

How Do You Show Special Needs Acceptance Instead of Judgement?

Have you experienced special needs unacceptance? Have you ever caught yourself judging rather than showing special needs acceptance? Share your true confessions and lessons in the comment box.

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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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

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Special Needs Hidden Treasures

Special Needs Hidden Treasures

Special Needs Hidden Treasures

Photo Credit: Stuart Miles at www.freedigitalphotos.net

After 13 years in the same place, guest blogger Maggi Gale and her husband are in the midst of an unexpected move. They are sorting through items stored in their loft (called an attic in the States) for 13 years. In the process, Maggi discovered some special needs hidden treasures to pass along to you.

Special Needs Hidden Treasures

July has found us up the loft, in shock over all the belongings we’d left there 13 years ago and subsequently forgotten! Now, through situations beyond our control, it’s time to sort through, condense, and discard, our not necessarily unwanted, but definitely unneeded possessions. Everything from homemade ceramic pots to childhood photos have all come up for scrutiny and added to the trash or treasure piles.

Hidden Treasures in the Loft

At first I was completely overwhelmed by the task. How could we possibly get rid of that book? I’ve had it since primary school! And these baby clothes! She was so cute in that! Practically speaking however, how could we keep it when we live overseas and the loft is no longer available to us? And hang on, if we haven’t used it for 13 years, looks like we don’t actually NEED it now.

But as I’ve realized that some things are treasures–just someone else’s treasure rather than mine–and then taken them to the charity shop, a feeling of liberty has begun to replace the overwhelmed one.

Hidden Treasures in our Faith

The truth is, we are not defined by our possessions. Yes, our possessions can say a lot about us and reflect our values, tastes and even experiences. But there’s a better and more eternal reference point for identity than the loft.

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. Ephesians 2:10

The special needs parent has a multitude of good works to perform every day, which according to this verse, God has prepared beforehand. Most of those good works are just as hidden to the world as our belongings were for those 13 years in the loft. And as Christians, these good works we’re doing can be part of the process of His workmanship in us.

Hidden Treasures in God’s Hands

So as we sort through our things, I’m keeping in mind that I am who I am because that is what God says. He knows who He made me to be. And special needs parenting has been a modelling tool in the hands of the ultimate Potter!

What Are Your Special Needs Hidden Treasures?

Have you discovered some special needs hidden treasures on your parenting journey? You’re invited to share 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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Maggi is a wife and mother of two daughters. She is a primary school teacher, having worked in Africa for 14 years before moving to the Middle East. Her passions are her animals and art. Her youngest daughter was born with tracheoesophageal fistula (TEF). This birth condition was to be the start of an arduous journey, impacting the whole family for several years. Through writing, she hopes to turn her experiences into encouragement for others on similar paths.

Author Jolene Philo

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Housework + Special Needs = Lower Expectations

Housework + Special Needs = Lower Expectations

Housework + Special Needs = Lower Expectations

 Photo Credit: varandah at www.freedigitalphotos.net

Guest blogger Kimberly Drew recently nursed her family through a bout of stomach flu. She’s here to explain what she learned about maintaining realistic expectations while caring for sick kids with special needs and managing housework.

Housework + Special Needs = Lower Expectations

There isn’t anything fun about having sick child. We have recently endured two rounds of the stomach bug in our house. All five of us got it in varying degrees. Gross! Our daughter Abbey cannot communicate the need to throw up, or get to the bathroom, or do anything to care for herself. It’s so upsetting and frustrating and messy. It’s times like these when everything else goes to the back burner as you care for your child. The dishes, the phone calls, e-mails, and laundry just start piling up and you don’t even care.

You are in survival mode.

You have to make sure that your child has what they need. When the immediate crisis subsides, you try to get things back in order. I don’t know about you, but for me, it takes about two weeks to recover from one week like that. I wish I could say I’m one of those people who jumps right in and tackles the whole house. I will do the immediate disinfecting that needs to happen and then kind of close doors and pretend the mess isn’t there. After washing all the sheets and towels, I wave a magic wand and the rest of the pile is suddenly invisible. It’s so convenient to just shut the door to the basement and ignore the pile. Email and phone calls are sort of the same. Finally, in a moment of exasperation, I will put on my favorite CD and work like a mad woman until everything is caught up.

The chaos is under control…for now.

What does any of that have to do with parenting a child with special needs? Everything. The reality is you just can’t do it all. Because every day of your life is this kind of assessment of what must be done now and what can wait. If life assigned heads of triage, parents of kids with special needs would get the job. Assigning things to their level of importance is part of the daily grind for most parents, but parents of children with special needs know it all too well. Health and well-being get admitted immediately, and laundry gets a bed in the hallway. Accepting that some things will take a back seat to the care of your child is hard for Type A personalities. I tell people that I’m a Type A stuck in a B- life. In a rough week I hover at D.

It’s true.

Over the years I’ve been forced to let go of things that used to drive me crazy. Sometimes you need to clean and cook, and sometimes you need to give your children cereal for dinner and put them to bed early so that you can watch TV. It’s okay not to have it all together. The sooner you can release the expectations you have on yourself, the sooner you will relax. It won’t be this way forever. In a week, or a few days, you’ll feel something inside nagging at you. You’ll find Lady Antebellum on your iPod and get out the Windex and paper towels. But if you’re not there today, it’s okay.

Take it one day at a time.

Have You Lowered Expectations?

Have you learned to relax your expectations about housework? What have you been forced to let go? What life circumstances taught you to do it? Leave a comment in the box.

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 four amazing kids on earth (Abigail, Jayden, Ellie, 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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7 Unspoken Realities of Special Needs Parenting

7 Unspoken Realities of Special Needs Parenting

7 Unspoken Realities of Special Needs Parenting

Photo Credit: imagerymajestic www.freedigitalphotos.net

Raising kids with special needs is full of surprising realities. Realities not often shared with other families because parents don’t want to sound whiny or complaining. But by avoiding that trap, we often fall into a different trap. A trap of isolation created by our lack of communication. So I was really happy to find a post by Michele Cushatt. She’s wife to 1, mom to 6, a speaker, and writer. Three of their children are adopted and deal with Reactive Attachment Disorder (RAD).

7 Unspoken Realities of Special Needs Parenting

In a post at her blog, Michele speaks out about 7 special needs parenting realities. Here’s a summary of what she said:

  1. We’re not snubbing you. It’s just that each day is an effort at survival. Please. Don’t give up on us.
  2. We don’t always know how to ask for help. Special needs families deal with big needs, maybe impossible ones. They appreciate it when you ask to help, but we’re not likely to ask you to take on needs like that.
  3. Our kids aren’t like your kids. Don’t assume our kids are the same just because your son screamed in the grocery store once. We have meltdowns almost every day. Saying “all kids do that” invalidates our reality.
  4. We don’t need your parenting advice. Maybe we do, but save it for a different time, okay? We don’t need you to fix us. We need you to be with us.
  5. Support services are more imaginary than real. There’s often a great chasm between the discussion of support services and the provision of them. We often feel quite alone when we bring our children home.
  6. Some days we want to run away. Some days we need to mourn what’s been lost. We need you to listen without judgment.
  7. We’d do it all over again. Though you’ve seen our tears and frustration, we would do it all over again. It’s worth it.

The complete article can be found at What Parents of Special Needs Kids Need You to Know.

What Do You Want Other Families to Know?

What other unspoken realities do you want others to know? Now’s your chance to speak out. Share them in the comment box.

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 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. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

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