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.

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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.

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Coping with a Newborn and Siblings with Special Needs

Coping with a Newborn and Siblings with Special Needs

by | Apr 3, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Coping with a Newborn and Siblings with Special Needs

Photo Credit: http://flic.kr/p/9mnWH8

Okay readers, it’s time to give new guest blogger Sarah Gray a hearty hey-ho Different Dream welcome. She’s the latest blogger to join the Different Dream family, and she’s here to talk about how to cope with a newborn and a child with special needs.

Coping with a Newborn and Child with Special Needs

Learning how to cope when baby number two comes along can be a stressful time in a parent’s life, especially when you’re already caring for a child with special needs. Whether your child has a learning disability or physical impairment, you may find your days already filled to the brink. Although the addition of newborn can be a truly joyous occasion, juggling life with your new baby can be trying.

Organization

Keeping a household organized can allow busy parents to keep up with the many duties that come with raising children. Be sure to divide the duties up fairly if you have the resources, so one person doesn’t become overwhelmed. By maintaining a set schedule of important items such as medical appointments, play dates, and school events, you can keep your children on task and allow your household to run smoothly.

Multi-Purpose Gadgets

Time is of the essence when it comes to taking care of your family. Finding the right gear that serves a number of purposes can save steps and space. The hottest products on the market are equipped to handle numerous jobs, such as an Ingenuity Washable Playard with dream center. The Ingenuity Washable Playard with dream center has a zipper in bassinet and allows for quick folding when you need to leave in a pinch. Also, newer strollers have become more efficient time savers by combining folding and unfolding into fewer steps. This becomes very beneficial in a crowded parking lot when you’re trying to get your kids safely strapped into the stroller.

Engage Others to Get Involved

Trying to balance too many things at once can lead to parental burnout, especially when you’re trying to give each child the attention that they deserve. To help offset stress, you can engage the help of family, friends, neighbors, and church groups. This will allow you one-on-one time to bond by doing activities that are geared for each child. Tackling the many household duties that come with the job of parenting is also beneficial if you have the help of others. It’s also a great way for your children to bond and spend time with other members of their extended family.

Time Management

Taking special care of both of your children will take a great deal of work. However, managing your time wisely with essential tools from your smartphone can aid in the process. If your child needs medication at a specific time, you’ll find cellphone apps that will allow you to stay on a specific schedule, such as MedCoach. It also allows you to keep track of their prescriptions so you don’t accidentally over-medicate. The smartphone applications can also be beneficial for your new bundle of joy when it comes to monitoring feedings and diaper changings. Input important reminders into your phone to clear up space in your head.

Take A Moment for Yourself

In order to maintain your own health and wellness, you’ll find it an important part of parenting to take personal time for yourself. Whether you go out for dinner as a couple, take a class at the gym, or spend an afternoon getting pampered, the time away will be refreshing and give you a new perspective. The addition of a new sibling is a wonderful time in a parent’s life. Juggling a new baby while caring for a special needs child can be done successfully with a little hard work, organization, and the right infant equipment.

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Holding It Together When Kids with Special Needs Don’t

Holding It Together When Kids with Special Needs Don’t

by | Mar 14, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Holding It Together When Kids with Special Needs Don’t

Do you have a hard time controlling your emotions when your child with special needs is out of control? The good news is you’re not the only person in the club. The bad news is that the club is big. Really, really big. And one of the members of the club is guest blogger, Kimberly Drew. Today, she talks about what she and her husband do when their daughter can’t hold it together at bedtime.

Holding It Together

So, my pre-teen daughter has decided on a new nightly routine…crying at bedtime and throwing a tantrum. We went through a phase of this when she was about four years old, and I thought I was going to go insane during those months. Here we are again, only she’s not so little and adorable anymore. She’s feels like a giant when she’s straightening her body like a surfboard against my 5’4” frame. The truth is, I feel helpless. Basically, unless I am willing to lay down with her until she falls asleep, we will have to persevere through this phase until she figures out that bedtime is bedtime, no matter how big a fit she pitches!

Her behavior got me thinking about all the other times when we’ve felt frustrated by her lack of communication and ability to express feelings without having a massive melt down. There is always a little problem-solving involved, a lot of prayer, and occasionally a moment of clarity where it all makes sense. More often than not, these kinds of troubles are something that just has to be waited out. Answers to why our children are acting out don’t always come right away, and sometimes there is no reason at all. It’s hard to be patient, to wait out the storm, when it’s blowing in your face. But I do know that it always seems to pass. One way or another, it has a way of dissolving into a memory, and I realize that it wasn’t worth getting so upset over.

Being a parent to a child with special needs has so many challenges. One of those is learning to control our thoughts and emotions when situations are out of our control, and specifically when our children are acting out. We have to remember that it’s normal and expected for them to go through phases of being unsettled. While we may not be able to talk it through rationally with our children, or know that it’s not going to happen again, we have to remember that we are still the ones who set the emotional tone of our home.

We are the ones who have to hold it together when they are losing it.

I know my own nerves have been tested many times. I wish I could say that I have come out of each test with a smile on my face, and a calm and peaceful spirit. Unfortunately, sometimes I’m completely frustrated and exhausted and frazzled! But there have also been moments of grace filled patience. I strive to have more of those!

Any Advice for Kimberly?

Has your child gone through a phase similar to Kimberly’s daughter? How did you hold things together? Leave a comment for Kimberly and other parents who feel like they’re about to lose control. Thanks!

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.

Author Jolene Philo

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Celebrate Special Needs Parenting with a Look Back

Celebrate Special Needs Parenting with a Look Back

by | Feb 3, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Celebrate Special Needs Parenting with a Look Back

Guest blogger Becky Hallberg knows the discouragement felt by parents raising kids with special needs. Especially during the winter when the days are cold, the nights are short, and cabin fever creates a perfect storm of hopelessness and isolation. Today, she offers the perfect antidote to discouragement: celebrating how far your child with special needs has come by taking a look back at the year just passed.

Special Needs Parents: Look Back

The start of a new year is often exciting. There are new plans to be made, new dreams to be fulfilled, and new goals to be achieved. But for those exact same reasons, the start of a new year can also be frightening.

Do you struggle as you look ahead to the new year, wondering how to help your child through the new plans that the year might hold? Are you struggling to even dream new dreams? Does life seem a little too overwhelming? And no doubt a new year will bring some new goals for your child—whether it’s IEP goals or personal goals that you would like to see your child achieve.

How do you juggle all of the “new” in the new year, without feeling completely overwhelmed?

Many times, we are reminded to look forward as we live life. There are plenty of quotes and Bible verses that remind us to move forward.

“I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”–Philippians 3:14 NIV
“There are far, far better things ahead than any we leave behind.”–C.S. Lewis

For us, though, as parents of kids with special needs, life isn’t always “normal” or “typical.” Sometimes we have to forge our own path, or find our own way, especially at the start of a year when things can seem so uphill.

So, what do I recommend? Well, I recommend not doing the norm. As in so many other aspects of our lives, I recommend going against the grain.

At the start of this new year,
Pause.
Breathe.
Look Back.

Yes, you read that correctly:
LOOK BACK.

This is a wonderful time of year to look back at last year and see all the gains your child made.

How do you look back? Well, did you blog? Go back and read through some of your posts from last year at this time. Where were you and your family? How were you coping with life? How was your child coping with life? How were you dealing with your child? What worked? How can you build on all of that for the year ahead?

You didn’t blog? No problem. Are you on Facebook? Did you know that you can look back at different months and see your status updates from those months? Go to your personal page and you should see a timeline, of sorts, on the right-hand side. Click on 2013, and then go back through the months to recap how you managed.

No blog and no Facebook? Are you on any other social media? Can you go back and look through tweets or pins or posts you made? If not, then use this time to just take a trip down memory lane. How did your child’s doctor appointments go last year? Who was an encouragement to you as you shared about your child? What goals do you feel were not met last year? Which goals did your child wildly succeed at?

Take those thoughts—those memories—and consider them. Yes, there were struggles. Yes, there were frustrations. Yes, there were many bumps along the way.

But—moms, dads, caregivers, friends—you made it.

YOU MADE IT!

You were successful last year—and even the year before that. Do you know why?

Because all that really matters is that you and your loved one are here, on this earth, today. You’ve made it here. You’re going to make it through this year, too. If you’re here (at this blog) then you know what a great source of support this space can be.

The year ahead may be full of plans, dreams and goals that need fulfilled. But look back. See how far you’ve come. You can do this. No, you can do this.

Just pause, breathe, and look back. Then, slowly and cautiously, when you’re ready, step ahead.

Welcome to the new year, where you’re always welcome to travel at your own pace!

What Did You See?

What did your look back reveal? How far has your child come? Leave a comment so we can celebrate with you. And check out Becky’s blog, Sharing Redemption’s Stories.

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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Laugh and Live with Special Needs

Laugh and Live with Special Needs

by | Jan 31, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

Laugh and Live with Special Needs

Do you ever get so wrapped up in the challenges facing your child with special needs that you forget to laugh? Guest blogger Kimberly Drew is here with a post about how your child can help you laugh and live with special needs.

Laugh and Live with Special Needs

I have to say, one of the best things about being Abbey’s mom is getting to see her sense of humor. The things that make her laugh are so out of the ordinary. And she has THE BEST belly laugh!

For as long as I can remember, Abbey has laughed at mishaps. My husband and I like to call it her death and peril humor. We were turning the TV channel once and there was a person hanging onto the edge of a cliff with their feet dangling and screaming. I thought Abbey was going to pass out from laughing so hard. We quickly discovered that The Three Stooges is one of her favorite shows. Anytime someone gets bonked upside the head with a 2 x 4 she’s practically sliding off the couch in hysterics. If you are in danger, she is laughing about it.

At some point in the early years, our youth group kids discovered that pretending to knock each other over would set her off. They quickly made a point of doing it on purpose just to get her to laugh. Then she figured out she could walk up to them and barely touch them and they would pretend to fall backward. Such power!  Such fun! It was all well and good until she started grabbing other children by the clothes to pull them down, and then proceeded to crack up while they were crying. We put a quick stop to that one.

Abbey also loves loud noises. Perhaps it’s the hearing loss? When we got a new DVD player it came with a volume knob instead of a button, she learned to practice drive-by volume control. Very casually she walks past and then sneaks a hand out to turn the volume on the TV to its highest setting. Of course this gets quite a reaction out of us, so she laughs at us running to turn it down. She even thinks a screaming baby is hysterical. If you are in the grocery store with a child throwing a temper tantrum, you are Abbey’s best friend. She will find you, she will laugh at your child, and she will probably sit down on the floor while doing it because when she laughs that hard she can’t stand up anymore.

If all of that isn’t funny enough, now that she’s a big girl she likes to grab people’s phones and purses. It doesn’t matter if she doesn’t know you. If you’re not looking, she’ll take your purse and walk off with it over her shoulder. As soon as we catch her, she makes this face and throws it back. She even takes things OUT of people’s purses. It has finally gotten to the point where I just make a joke out of it to keep from being embarrassed. I tell people, “Oh, I taught her how to do that… she’s pretty good huh?”

I love this kid.  She reminds me to loosen up, and that sometimes living with special needs is worth laughing about!

What Helps You Laugh and Live?

What makes you laugh on your parenting journey? Your child? A movie or TV show? A family joke? Leave a comment to get us all laughing!

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.

Author Jolene Philo

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The Jogger, Part 2

The Jogger, Part 2

by | Jan 28, 2014 | Different Dream, Self-Care and Stress, Special Needs Parenting

The Jogger, Part 2

Welcome to Part 2 of guest blogger Laura Maikata’s post about coming to grips with the very premature birth of her son at 23 weeks. In Part 1 she described how seeing a jogger pushing a baby stroller upset her equilibrium while her baby was in NICU. Today, she finishes the story with by giving us a glimpse of what the stroller revealed.

The Jogger, Part 2

…My second glance changed the meaning of the entire scene. This wasn’t the baby I’d expected to see. This baby wasn’t picture perfect. She was medically fragile. I could just barely make it out as I zipped past, but it was clear. She was breathing through a nasal cannula. She was dependent on oxygen from a tube inserted into her nose and held in place by clear plastic tape on her cheeks. I took another glance backwards and saw the black oxygen tank, a boxy canvas bag, stealthily stored under the seat.

My image of the mother’s perfect life changed. I didn’t begrudge her slick jacket and state-of-the-art stroller. She wasn’t some ideal that could have been. She was, instead, a piece of my reality. She understood me more than I’d guessed. She’d probably been where I was going, the same NICU on the same third floor where hopes and nightmares collided.

This baby she was pushing wasn’t an image of what could have been. This baby is what could be. I choked back a tear.

It was time to look forward, not backward. I would never know that baby’s story, but in that moment of a backward glance, she gave me hope. We could make accommodations. We could find ways to make this new reality work.

If my son’s kidneys started working again but his lungs still failed him, we could go for runs. Maybe by spring when things thawed again, he’d be home. Maybe I’d have him in the stroller with me, oxygen tank stored underneath, and we would go look at the flowers on the trees together. And if he couldn’t see, he could still run with me and we’d feel the breeze together. Maybe someone would pass us on their way to the NICU, and maybe we’d pass a bit of hope forward. Maybe…

The NICU was a five month marathon for us. We rejoiced at reaching the finish line and bringing our son home. My one year old and I are now training for another run. Not a marathon, not yet. A 10k will do. His kicking legs give an excited thump-thump as his ankle-foot orthotics hit the canvas of the jogging stroller. Through thick glasses he watches the leaves spread shadows on the road before us. These thumping legs endure hours of physical therapy a week to start working right. These legs and their little boy owner are my new inspiration. When I get tired, I remember his race, and I find strength for the next mile. I believe he will run, even with weak lungs and weak muscles. We are not alone, neither of us. But if the past is any indication, we are capable of more than we thought possible. We know, because we’ve seen others run this race before us.

Pass It Forward

Did the hope Laura passed forward today touch your heart? Leave a comment for her or tell about how someone passed hope forward to you during your special needs parenting journey.

The Jogger, Part 1

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Laura Maikata lives in Grand Rapids, Michigan. She is mom to three fantastically unique children, the youngest of whom was born far too soon. Within months of finishing a MA in Teaching English to Speakers of Other Languages (TESOL), Laura found herself as a student, instead of teacher, of a different kind of foreign language—the language of medical professionals. Her son’s unexpected beginnings have forever shaped her professional and personal aspirations. She writes and speaks about issues of prematurity, including the difficult decision to resuscitate a child on the cusp of viability. Her blog can be found at momofa23weeker.blogspot.com.

Author Jolene Philo

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