Support for Caregivers: Bridging the Gap

Support for Caregivers: Bridging the Gap

by | Apr 30, 2014 | Books and Resources, Different Dream, Special Needs Parenting

Support for Caregivers: Bridging the Gap

Professional caregivers do important work, and they know it. But those caring for kids with special needs, aging parents, or spouses who need assistance also know their work is stressful and sometimes discouraging. The Different Dream crew is always hunting for resources to support their important and stressful job. Today’s guest blogger, Jonah Okun, is here to acquaint you with the online support community, The Caregiver Space.

Support for Caregivers: Bridging the Gap

Caregiving isn’t always that pretty or fun, but it becomes a part of us. It’s an act of commitment, love, loyalty, and nurturance inherent in who we are. But doing it alone, should be out of the question. We need community.

Caregivers Need Community

Our separate dwellings will never be enough to stem the tide of adversity if we expect to come out all right on the other side of caregiving. Caregiver burnout isn’t a myth; it’s an inevitable when we don’t reach out. The community connection we crave though doesn’t always feel close at hand. Community means connection, and more than that, it translates into understanding. It’s trust that someone else will be there offering support and guidance in each new chapter.

Caregivers of those with special needs don’t have it any easier. Responsibilities mount: therapy, doctor visits, treatments…it’s rarely realistic to expect personal time to emote, find recognition, appreciation, or personal support.

What The Caregiver Space Offers

The Caregiver Space is a rare breed of community, dedicated entirely to helping caregivers cope with daily challenges and connecting them with a family of caregivers who understand the daily pressures, thoughts and feelings inherent in their work. Bridging the physical space that divides us, The Caregiver Space operates entirely online, a free and readily accessible website where caregivers congregate 24 hours a day. There, they connect, share stories and locate support resources from the convenience of their own homes.

Caregivers on the website have the opportunity to join a dialogue specific to the type of care they provide. Initiating a personal correspondence through messaging and private chats is a way the network encourages relationships to flourish with another parent who maybe has already seen their child through a tougher stage in their condition. For all the ways caregivers might yearn for connection, there’s comfort knowing members have access to their own personal blog to reflect privately on a writing page entirely their own.

A Haven for Caregivers

With time often limited and energy low, taking care of ourselves rarely feels realistic. The Caregiver Space values our need for self-care and our frenzied lives doling out bite sized bits of self-care strategies. Their short articles and videos span the gamut from fitness and nutrition to proper sleep, mental health and therapeutic writing.

It’s a place to land at the end of the day for 10 minutes: to vent on your blog, ask a question of the parent support community, destress with a few quick exercises or reconnect with another caregiver for some sage wisdom.

There are far too many caregivers privately coping with the burdens of a life spent caregiving. The Caregiver Space is that rare haven where caregivers can gather and locate the support they need.

Visit and join this community of caregivers at www.thecaregiverspace.org

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.

By

Jonah Okun is development director at The Caregiver Space. He holds a degree in Comparative Digital Communications and Happiness Studies from the University of Massachusetts, Amherst. He is a passionate pocket billiards player and poet and happily resides in Brooklyn, New York.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

7 Unspoken Realities of Special Needs Parenting

7 Unspoken Realities of Special Needs Parenting

by | Apr 28, 2014 | Different Dream, Self-Care and Stress, 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.

By

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.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

3D Printers: The Future Is Now

3D Printers: The Future Is Now

by | Apr 24, 2014 | Books and Resources, Different Dream, Special Needs Parenting

3D Printers: The Future Is Now

 Photo Source: www.thinkgeek.com

I puffed away at my morning stretches and exercises. The radio was on as a distraction from the pain and boredom. But I was composing a mental to do list and only half listening.

Until.

Until the announcer said something about 3D printers and tracheomalacia. He went on to define the medical term my husband and I first heard in 1982. The doctor had used it to explain why our newborn baby’s breathing was a constant wheeze and rattle. “The cartilage in his trachea isn’t fully developed, so his windpipe flops and makes the wheezing sound.” He then offered reassurance that in our baby’s case it wasn’t life-threatening, and he would outgrow it.

He did.

The radio announcer’s voice pulled me back to the present. He told the story of a little boy named Garrett. His windpipe was so floppy, it often collapsed. Then Garrett couldn’t breathe. He turned blue. It happened so often that Garrett was 16 months old and had never left the hospital.

Until.

Until two men at the University of Michigan—a biomedical engineer named Scott Hollister and Dr. Glenn Green, a specialist in pediatric otolaryngology—came up with an idea. They decided to use a 3D printer to design and build a splint to put around Garrett’s trachea to keep it from collapsing.

It worked.

At 18 months, Garrett was still in the hospital. But he was getting stronger and needed less help breathing. He smiles now and doesn’t turn blue. His parents are thrilled. The splint will expand as Garrett grows and eventually dissolve in his body when his windpipe is strong enough to function on its own.

I cried.

To read the rest of The Future Is Now and posts by other special needs parenting bloggers, go to the Not Alone website.

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.

By

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.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

A Break for Weary Special Needs Parents

A Break for Weary Special Needs Parents

by | Apr 16, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

A Break for Weary Special Needs Parents

 Photo Credit: Stuart Miles at www.freedigitalphotos.net

Guest blogger Liz Matheis is the parent of three kids ages 7, 5, and 1. She knows what it means to be weary, and today she offers ideas about how parents of kids with special needs can get a break now and then.

A Break for Weary Special Needs Parents

You’re a caregiver of a child with special needs, and there are days that seem endless. Endless being defined as it feels as if there is no end to the day. You are constantly in thought, anticipating the next task, the next transition, accommodating your child’s needs, making changes in your home, in your routine, in your schedule. You are tending to everyone else’s needs, and yours may or may not get addressed at around midnight when you are so weary you are probably drooling over your remote control! You can probably do this for a couple of days, but burn out is impending, and you shouldn’t wait until you feel like your head is going to implode or explode, or worse, both.  Instead, let’s think about how we’re going to give you some down time.

As a caregiver to your special needs child, you are in a constant state of fight (vs. flight). Your body has this mechanism because, back in the day, you needed to run away from the lion that was looking at you and thinking you would make a fine snack. But, today, we don’t need to run away from the lions that surround us… well, at least not the literal lion! With that said, your body is constantly pumping cortisol, which is not how we were meant to function. As a result, your body does not get a chance to repair itself, which leaves you at risk for illness, general malaise, fatigue, depression, and anxiety.

#1: Give a Break and Take a Break

Between you and your spouse, you need to take a break and give a break. That is, when you’ve simply had enough, tag your spouse in to handle the situation. Walk away and take a breather, and don’t wait until you’re at the end of your rope. Recognize your bodily signs and your emotional state to know when it’s time to ask for help and walk away. If you are a single parent, swap time off with another single parent. You can also use the “Give a Break and Take a Break” idea to watch the kids one night when your husband goes out, and vice versa.

#2: Take a Kit Kat Break

Well, not literally, but at the end of each night, give yourself one hour to decompress from the day. Do whatever you want. Have a cup of tea, watch your favorite show, read a book, give yourself a manicure. Whatever makes you feel happy! But, dedicate this one hour to yourself each night so that you feel like you have something to look forward to at the end of the night. No matter how rough the day is, you know you have that one hour to yourself later.

#3: Ask for Help

A date night or a girl’s night is your God-given right. You may be saying right now, “Well, I can’t leave my child with anyone.”  If you have a willing family member, enlist his/her help. If you don’t, find a babysitter and train him/her to understand your child’s needs and how to cope. If you don’t have someone to help, then hire someone to help.

Making a commitment to your well-being makes it possible for you to take care of your child and family. When there is an emergency landing in a plane, parents/adults are instructed to put a life mask on first, and then place it on your child. This is done for a reason. If you are not breathing, you can’t do anything for anyone else.  Make use of these easy and do-able ways of taking care of yourself consistently.

How Do You Find Rest?

What do you do when you’re weary and stressed? What works and what doesn’t? 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.

By

Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ. She offers support, assessments, and advocacy for children who are managing Autism Spectrum Disorders, ADHD, learning disabilities, and behavioral difficulties, as well as their families. She is also a contributor to several popular magazines. Visit www.psychedconsult.com for more information.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Strategies of a Special Needs YES MOM, Part 2

Strategies of a Special Needs YES MOM, Part 2

by | Apr 10, 2014 | Different Dream, How-Tos, Special Needs Parenting

Strategies of a Special Needs YES MOM, Part 2

 Photo Credit: Stuart Miles at www.freedigitalphotos.net

Yesterday in Part 1 of guest blogger Amy Stout’s new series about special needs YES MOMS, she described six strategies employed by YES MOMS. Today she’s back with two more strategies and some illustrations of a YES MOM in action.

Strategies of a Special Needs Yes Mom, Part 2

#7: A YES MOM Chooses her Battles and Uses Positive Phrasing

First then

Not everything can be a YES, but there is a way to communicate that elicits cooperation. A YES MOM might respond, “You know what? I think it is really great that you would like to read a few more chapters before you feed the dog. That must be a really good book you are reading. You absolutely can read a few more chapters, but I would like for you to feed Skippy first because he is very hungry and can’t sleep when his tummy is growling.  First feed Skippy, then read more chapters.” She might even engage her child in conversation about the book while he is feeding the dog. No one likes to work alone and she might gain valuable information by asking a few probing questions about something that interests her child.

#8: A YES MOM Knows How and When to Use the NO Word

positives

There certainly are times when a YES MOM chooses to use the word NO. She is very methodical and wise in implementing it. NO doesn’t just escape her lips in anger or frustration. It is not a manipulative word. It is reserved for situations which are dangerous, urgent, an emergency, or of great conviction. Her children know that when the YES MOM says the word NO that they need to stop immediately and assess the situation or the surrounding area. They don’t often hear the word NO, so when it is spoken it has power and reverence attached to it. They know that the YES MOM would only use that word if it were critical to do so.

Super Mom

You might think that the YES MOM sounds a little like Super Mom with Super YES Powers, so let’s look at a real-life example: How does a YES MOM handle the “I want” scenario in the toy aisle of a store?

Toy WarFirst of all, she would communicate the purpose of the shopping trip: “We are going to the store to purchase bread, milk, cheese, and toilet paper.”

Then she would give the child the opportunity to be a responsible leader in the shopping trip by saying, “Which items would you like to be responsible for putting in the cart?” By agreeing ahead of time as to the purpose and duties of each member embarking on the trip, she may avoid the toy aisle all together. However, if the child suggests the toy aisle, the YES MOM would do her best to use the toy aisle window shopping as a valuable reward incentive.

She would express appreciation for a job well done. “I appreciate the helper you have been today. You chose a responsibility and you followed through like a great leader would do. Because you were responsible and kept your word, we absolutely can look at something you’re interested in.”

Well Done

She would then set expectations and a time limit. “We can look at toys for 15 minutes, but we will not be buying today. When the timer buzzes, it will be time to go to the checkout lane.” She then asks for the child’s agreement: “Are you okay with going to the checkout when the timer buzzes?” She waits for their agreement. When the child agrees, she reinforces “I know you are a child of integrity and you will stick to your word.” If the child “forgets” and asks for toys, the YES MOM shows the child the pre-planned shopping list and reminds that today’s shopping trip was for these items. “I’m sorry,” she says, “but toys are not on the list for today.”

Shopping List

However…she then pulls out a special YES MOM strategy and affirms the child. She might say “I can see that you really like that toy. Would you like to write down the name of that toy and the color you like and we can add that item to your birthday/Christmas wish list?” She then flips to the next page on her shopping list, offers it to the child with a pencil and allows them to pen the information.

Operation Affirmation

She works her way toward the checkout while talking with her child about the toy and all the fun ways the child could enjoy it.  Most of the time, by the time a special holiday rolls around the child has moved on to other things and other interests, but by showing interest in what has captured their heart today in the middle of the toy aisle, the child is then cooperative and willing to alter the course of their actions.

listen

In the unlikely event the child is still uncooperative, there are consequences for the behavior at home. In our home, taking a long break from electronics works wonders! But you choose what is highly motivating for your child. This is a vital piece to YES MOM success. The next time you attempt to train your child, they will remember that there were unpleasant consequences and be more motivated to cooperate and become a child of integrity.

Super Mom 2

What Do You Think?

What do you think of Amy’s YES MOM strategies and examples? Are you ready to try them out? Have a few questions? Leave a comment to share your thoughts or to get Amy’s advice about how to implement these strategies. And visit her blog, His Treasured Princess.

Strategies of a Special Needs YES MOM, Part 1

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.

By

Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts

Strategies of a Special Needs YES MOM, Part 1

Strategies of a Special Needs YES MOM, Part 1

by | Apr 9, 2014 | Different Dream, How-Tos, Special Needs Parenting

Strategies of a Special Needs YES MOM, Part 1

 Photo Source: ambro at www.freedigitalphotos.net

Today guest blogger Amy Stout unveils a new series about special needs YES MOMS today. In Part 1 she describes six strategies employed by YES MOMS. Tomorrow in Part 2, she’ll be back with two more, and she’ll describe what a YES MOM in action is like.

Strategies of a Special Needs YES MOM, Part 1

yes mom

The Lord chose to make me wait a decade before he blessed me with a child. During that very long wait, I had a wonderful opportunity to observe parents in various situations as they made the valiant attempt to raise healthy, happy, and productive children. One of the observations that I made was that children don’t like the word NO. In fact, they rebel against it and often times a tug of war ensues. The word NO seemed to inflame an already heated situation. So, I decided that I was going to be a YES MOM.

What is a YES MOM?

A YES MOM is not Santa Claus, the Tooth Fairy or a Fairy Godmother granting each and every wish and whim their child expresses. She is not a pushover and does not agree to every activity or volunteer opportunity. However, a YES MOM does use several effective strategies.

#1: A YES MOM Sets Expectations to Avoid a NO Situation

Expectations

She clearly communicates what is coming next. This might be a daily schedule, use of a whiteboard, or a handwritten note. It might be a verbal communication, or visual communication. It might even be one task broken down into steps (ie: Brushing teeth—first we rinse the toothbrush, then we put on toothpaste, then we scrub the top teeth… etc). She always rewards the child for carefully following directions.

#2: A YES MOM Is a Problem Solver

red shirt

She helps her child brainstorm and think through a possible solution. If her child is missing a book, she doesn’t say, “No, I have no idea where you left your book.” Instead, she might suggest that the last time they had the book was in the family room and then ask her child some investigative questions to prompt remembrance. She might even give her child a magnifying glass and pretend the child is a private investigator and write down clues that get one step closer to finding the missing item. She then celebrates the discovery with her child.

#3: A YES MOM Understands WIFM

What's In It For Me

Every child wants to know “If I cooperate, how will this benefit me?” A YES MOM always removes the questions and uncertainty and knows how to point out the benefit of cooperation. This benefit may not be something physical or reward driven, but could simply be the benefit of the child knowing that they are an important part of the family unit. She might say, “I loved the way you put the silverware in the drawer tonight. It makes Daddy and me so happy when the tools we use are ready and available when we need them. You did a great job. Your family appreciates you and your contribution.”

#4: A YES MOM Is a Team Player

Team

She involves her children in everyday decision making. She might allow them to plan dinner one night a week, help decide what to purchase or make Grammy for her birthday or have the special privilege of being the grocery shopping helper for the week—which always ends in a small treat.  Shared experiences draw us closer to one another.  If parents are always calling the shots, the children never learn important leadership skills.

#5: A YES MOM Empowers Children

Encourage

Sometimes the order of events in a day can be flexible. A YES MOM knows that this is a great time to allow her child to be in charge and exercise sound decision-making skills. She involves her child in the process of making a list of what needs to be accomplished in a certain time frame and then empowers them to decide which order to complete them. For example, a YES MOM might say, “Sweetie, can you think of anything that we need to do this morning?” She prompts and suggests, helping the child think of tasks that need to be accomplished such as eat breakfast, take a bath, feed the cat, shop for groceries. She then lets her child decide which task to complete first. They keep a visual list and cross things off as they are completed. A YES MOM always verbally shows appreciation and respect for the way the child handled organizing their time and accomplishing the tasks.

#6: A YES MOM Is Open to the Ideas of Others

lightbulb

She solicits suggestions and ideas from her children. She presents the scenario and then asks probing questions of her children as to what their ideas would be in order to resolve the situation. She then tries to implement as many of those suggestions as possible or help the children realize what would be workable or not workable. Children love the trial-and-error experiment and enjoy seeing their ideas put in motion. This exercise greatly lifts a child’s self-esteem and helps them exercise problem-solving skills.

A YES MOM Says, “I’m Coming Back Tomorrow…”

…because tomorrow, Amy will be back with two more strategies employed by YES MOMS and ideas about how to put them into practice. Until then, leave your best YES MOM strategies in the comment box and check out Amy’s blog, His Treasured Princess.

Strategies of a Special Needs YES MOM, Part 2

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.

By

Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

Author Jolene Philo

Archives

Categories

Subscribe for Updates from Jolene

Related Posts