Organizational Strategies Are Saving My Life Right Now

Organizational strategies are saving my life right now, and my 94-year-old mother is the reason.

Our family is in a season similar to the early 1980s when my husband and I were parenting a medically fragile baby. Back then one medical crisis after another meant dropping everything, buckling our son into his car seat, and racing to the doctor’s office or hospital. Nowadays, calls from Mom’s long term care facility require snap decisions regarding her medical care or unexpected trips to her bedside.

Thankfully, I cut my organizational teeth as my son cut his baby ones. The process was drawn out and painful for both of us. Still, I’m grateful for lessons learned in those years because they taught me that organization can ease the stress of caregiving. Several organizational strategies are saving my life right now, and today I’m sharing seven of them.

#1: The Lazy Genius.

Kendra Adachi is host of the The Lazy Genius Podcast and author of two amazing organizational books, The Lazy Genius Way and The Lazy Genius Kitchen. She approaches organization as principles to apply in your circumstances rather than as tips that worked in her life. Her method helps me “lazy genius” how to deal with my caregiving situation, and it can do the same for you.

#2 Sticky Notes.

3-M introduced Post-It® Notes in 1980. I wrote notes to the substitute teachers who took over my classroom on a moment’s notice. Now I use them to write notes to myself about what I was doing before being called away. They are also handy for instructing my husband, daughter, son-in-law, and grandkids what to eat or not eat in the fridge or freezer. Those stickies are assurance that there will be food when I arrive home exhausted.

#3 Freezer Meals.

Yep, another food strategy. Because nothing stresses me more than having to think of what to feed my family when I’m emotionally spent. And nothing eases my stress like pulling out a freezer meal and leaving a sticky note with supper instructions (see #2) before dashing out the door to go to Mom. When I menu plan for the upcoming week, I make sure 1 meal is a recipe I can double, triple, or quadruple. 1 batch is for supper, and the rest are packaged and put in the freezer.

#4: iPhone’s Reminder App.

My daughter created several shared grocery lists using this handy iPhone App. Yes. Another food strategy. This time it’s because not having all the ingredients when ready to make a quadruple batch of something is also very stressful. And with 3 adults in the house who share cooking and shopping duties at several grocery stores, the shared lists let us communicate without convening a family meeting each week. Which I likely would miss when called away because of Mom’s latest health crisis.

#5 Electronic Library List.

This electronic list is available to card-carrying patrons of our local library. After I search for a book, DVD, or other item at the library website, I can click a button and add them to my list. When I go to the library, I pull up the list on my phone, find the item on the shelf, and delete it from the list. Your library probably has a similar system. For our family, which is deeply invested in reading, this list is better than sticky notes.

#6: Paper Calendars.

Wall calendars work for me in ways that electronic calendars don’t. It’s always in the same place in my kitchen. I menu plan and write big events on mine with Sharpie marker so a month’s worth of meals (More food. What can I say?) and events are visible at a glance. I also prefer a paper planner over an electronic one because flipping pages is easier than swiping screens.

#7: Pill Organizers.

Whether they hold vitamin and mineral supplements, pills prescribed by a doctor or over the counter medications, these organizers cut down on the “Did I take my pills?” or “Did I give my kids theirs?” confusion. I filled mine every weekend until a Facebook friend posted a picture of the 4 pill organizers she filled once a month. I was an instant convert. Not only does this practice save time, I can see what’s running low and order more right away. This decreases the likelihood of running out when Mom’s next health crisis hits.

These organizational strategies are saving my life right now. Bottom line––being organized allows me to better focus on Mom’s needs when they arise. However as you and I know much of a caregiver’s life, or the life of the loved ones we care for, can’t be organized or controlled. In those situations, God calls us to rest in His control over all things. When we do, He will reveal His sovereignty and provision in ways that lead us to deeper faith, greater worship, and confidence in Him.

Written by Jolene Philo

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Jolene Philo is the author of several books for the caregiving community. 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. See Jane Run!, the first book in the West River cozy mystery series was released in June of 2022.

My 4 Tips for Surviving a Special Needs Train Wreck

My 4 tips for surviving a special needs train wreck became part of my life decades ago. Our son, who’d had major corrective surgery at birth, was thriving.

Or so we thought.

Then he pulled away one night while I nursed him. His eyes rolled back in his head, and he quit breathing. I screamed for my husband, who improvised his own version of baby CPR.

It worked.

I ran for the phone to call for an ambulance. Minutes later we were on our way to Rapid City Regional Hospital where the problem was diagnosed. The next day a medical transport plane flew my son and me to the University of Nebraska Hospital in Omaha for more corrective surgery. The surgery was a success, his recovery slow, steady, his long term prognosis good.

Even so, I struggled.

Our son’s health setback gobsmacked me. My husband, my parents and siblings, my friends were hundreds of miles away. I was alone on my birthday. From my perspective, the situation felt unsurvivable.

Yet we survived.

Our young family (including our son who is now 40) endured several more complications that required unexpected hospital stays. Over time I developed these 4 ways to cope with the train wrecks that are part of raising a child with disabilities and special needs.

Tip #1: Note the Ways God Prepared You

Sending our baby off to surgery again was hard. Even so, I was a better prepared parent the second time around. During the stay at Rapid City Regional, my husband went home and packed my suitcase with clothes and items we knew made hospital stays easier. Also, the hospital was a familiar place. I knew nurses in the neonatal intensive care unit I left them a message, and several of them visited. Those details showed how God had prepared the way, that this hospital trip was part of His plan. Let the evidence of God’s sovereignty over your family’s train wreck do the same for you.

Tip #2: Find Blessings Along the Way

Several blessings surprised me as the days unfolded. As a nursing mother, I had a seat on the medical transport plane. In a pediatric wing, even in 1982, I was treated like royalty. I stayed in my son’s room. They provided toiletries, a shower, a breast pump, and meals at no cost. Because my basic needs were taken care of, I had energy and time to advocate and care for our son. When we as parents look for and are buoyed by blessings in hard times, our capacity to care for our children grows.

Tip #3: Ask for Prayer and Practical Help

The prayers of friends and families made a difference during our son’s many surgeries and recoveries. I learned to ask people to pray in specific ways, and they did. When I finally requested help for specific, practical needs, the people who responded revealed God at work. When you ask for practical help, God will make others the answers to your prayer. Can you think of a better way to cope when life is hard?

Tip #4: Tend to Your Needs

When there’s a special needs train wreck, our first priority as parents is to protect our kids. I spent days protecting our son after his surgery. Eventually he stabilized. The nurses provided good care, and I could tend to my own needs. But I felt guilty and selfish paying attention to myself instead of him. How can we avoid that trap? By tending to our needs when our kids are in good hands. Those hands may not be as capable as ours, but they are good enough for a short time. Take advantage of those good enough hands while we can. so we can take care of our needs and return refreshed, recharged, and able to survive the ride.

Written by Jolene Philo

Jolene Philo is the author of several books for the caregiving community. 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. See Jane Run!, the first book in the West River cozy mystery series was released in June of 2022.

REST

I had big plans for the vibe my family would have.  I love classical music and jam band music and Bob Marley.  I love cozy blankets and crackling fires.  I love the beautiful smells and sounds and sites of nature.  I love all things calm and soothing and soft and comforting and chill.  I think it’s always been my way to cope with my own anxiety, and I always pictured the perfect workplace for me would be a spa. I had every intention of carrying that vibe over into how I parented and the lifestyle our family would thrive in.  

Oh boy.  It has been far from the reality of how things have been going.  In muddling through the parenting of young children and the task of figuring out the special needs we have in our home, it has been anything but chill.  It has been beautiful and full of love and happiness, but it has also been frantic, electrified, a tad loud and flat out buzzing in our home.   I laugh as I type this, because we can plan and envision our future all we like.  We just aren’t in charge of the twists and turns our life will take.  My sharing this is in no way a complaint.  I have none, aside from the fact that I’d love a little more sleep.  Just a little.  It's a fact.  Our vibe is the opposite of the therapeutic calm I maintained in my home as a single woman.

I recently read an article about the effects of hyper-focusing on our children.  I think the piece was probably written with a typical child-rearing experience in mind, but it stung a little reading it.  It made me ask myself a couple of questions.  Am I too hyper-focused on the needs in our home, and missing the calm and chill we all would benefit from?  Am I able to turn this buzz off by creating that vibe I so desire here, that I had always intended before things got so hard? Can I just rest even within the frantic?  Those thoughts all flew through my mind as I read this article.  

Then the thought that pops into my mind so often, did just that.  It popped in.  “But, we’re different”.  I have to constantly assess needs and if I’m not focused in, I might miss it.  One of the systems we have in place, may fail if not surveilled each moment.  And we are different, but hasn’t it been my mission to convince the World that all people are different, and in that way we are the same?  We are not so different, that this message should not apply to us as well.  We are loving parents. Ensuring that every need is met is important, but the focus of our entire family life does not have to be based on our children.  While meeting the special needs we’ve encountered, it feels time to rest in terms of the hyper-focus I’ve felt to this point. 

It occurred to me that I had gotten very swept up in figuring it out and in the research and in the moments that I felt helpless in. It clicked that my children will benefit from the calm I’ve always clung to as a coping mechanism for myself.  It’s almost as if, in the flurry of the last few years, I’d forgotten how to procure an environment of rest.  

After mulling over this, I started claiming some peace and calm at home for myself, but for my children, as well.  We can parent our special needs family members well without putting all of our focus on parenting.  In removing the unseen microscope from the members of our family, each one can exhale.  And if we need anything, after the whirlwind of navigating PANS/PANDAS in our case, we all need rest.  We need rest during all of the storms of life. 

We are still well within the storm on many days, but I can relax.  My kids can, too.

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

If you build it they will come. They really will.

It has been our experience, as a special needs family, that unwanted isolation can slowly creep in.  And I think it comes in three distinct forms. 

The first being an element of self-isolation. 

There can be anxiety surrounding unknowns, and there can be comfort in sticking close to home and routines.  At home, you can control your environment. Also, some things that typical families are doing just don’t work for us.  For example, we are not sitting in the bleachers at little league games chatting with and growing community with other families. Before you know it, even very social people can kind of step back from the social experience they desire.

A second way isolation can sneak in is purely through absenteeism. 

Individuals with special needs sometimes also have health struggles.  Not to mention the many appointments per week for different types of therapies and the like.  That is the case in our family, and we are absolutely the family that has to cancel sometimes.  Okay, a lot of times. We are not always able to attend things that would grow relationships and foster more social involvement.  

Thirdly, I have seen isolation occur for our family when others operate in such a way that we are set aside and isolated from social settings. 

I don’t assume this is ever done with intention.  I even suspect that some very well-intentioned  people would be shocked to hear that they played a role in setting us apart. There is an element of feeling invisible.  Inclusion is a buzzword that you hear about all of the time.  However, the number of times we’ve truly experienced it has been, up until a certain point, fewer than you would think. It is sometimes hurtful, and really not something I even understand.  Yet, as I endeavor to share my true experience, I have found times when it’s clear that many people are just starting the process of learning how to navigate interaction with a special needs family.  As an insider, I would tell them, there’s nothing to navigate. We are just a family. We are a family, just like any other family. 

I decided we would not sit and view life from the sidelines.  I didn’t want my family's story to be negatively impacted beyond repair, due to anxiety, circumstance or the impact of others behavior.   I kicked and screamed, figuratively of course, and put us out there over and over again.  It really felt like grabbing at straws trying to find our village.  I so strongly desired for our family to have a village around us.  I wanted to experience life with other people.  I think there is so much value in “doing life” with others. 

A dear friend saw me grappling with this and encouraged me to create the opportunities that I desired for my entire family.  I also felt those nudges from God.  You know, that feeling that you need to do something and do it now.  That feeling that just keeps coming back again and again until you listen. I was nervous, but determined.  

The first thing I did was start a monthly Mom’s Dinner Out.  I looked about my life, and saw women that I enjoyed being with, sprinkled throughout my week.  There were women that I’d loved for years, including the one I mentioned earlier.  There were women that I loved that had more recently entered my life, and there were women I’d only met a few times.  None of them knew each other, but each knew me.  I knew I needed some connection with other moms.  So, I took a deep breath and hit send on the first evite.  That dinner club met almost every month, or every other month, until Covid put a pause to things.  I cannot tell you how life-giving it was for me.  Each month, a different group of ladies came, and we laughed and shared life for a few hours.  New friends were made. I can’t wait to start back up as things continue to get back to somewhat normal in the near future.

The next thing I did was create a similar experience for my special needs child.  I, again, took a deep breath and posted my idea for a weekly social skills playgroup on nearly every homeschooling and special needs social media page my friend and I could find.  As a result of those posts, I was able to find an incredible special education teacher to lead our group in social skills lessons.  I also found community for my child.  I watched him form friendships. This group led him to make friends that can understand some of the things that his other loving friends can’t fully relate to.  Every child there can just be their true and authentic self, without fear of judgement, that of children or other parents.  I watched as my child, that I knew wanted and needed social engagement, grew in confidence.  As life-giving as my dinner club was for me, this growing group of children is for my son.  

I did one last thing.  As a person who is determined not to let our differences impact our experience, I created a monthly field trip group for all children.  It has grown to include any family that wants to attend.  It is an amazing mix of homeschooled and traditionally schooled children of every age.  There is no setting anyone to the side in this group.  It has brought friends that we never would have met otherwise, and friends that we hadn’t seen for sometime.  It has given us a focus and a place to be.  

I’m thankful that I listened to those nudges from God.  I continually thank my friend for her sage advice and encouragement when I needed that push to go make things happen.   And, now I’ll pass along what she recently said to me, and you’ve heard it before, but this time hear it as it can apply to your life. 

If you build it, they will come.

They really will.  

What do you pray for that is lacking in your family’s current view of life? What nudges have you been getting from God? I implore you to step out of that comfort zone and put yourself out there.  There are other people waiting for you to do it.  There are people desiring the same things you are.  It is my prayer that someone, who may be feeling alone and isolated, will read this and go for it. 

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

Confidence of a Five-Year-Old

I want to live with the confidence of a five-year-old.

That thought flitted through my mind while my grandson hauled out his art supplies the day before Halloween.

“I’m turning the kitchen into a haunted house because I just learned how to draw cats,“ he informed me as held up a picture. “I can draw them really good.”

The picture below is one his cats. At first glance, I thought it was a sheep.

He was so confident in his drawing ability, he took a break from creating masterpieces and gave his little sister a tutorial in how to make them.

She was awestruck by his skill. “Your pictures are beautiful,” she breathed.

I was awestruck by his confidence. “How did he develop such self-assurance?” I wondered.

He drew picture after picture, blazing through paper and tape as he hung them from every available space. I could see how the love his parents speak into him every day is building him up.

Tell us how that made you feel.

We love you because you are our little boy.

You’re a good problem solver. You keep trying until you figure it out.

Look at all the things you’ve learned to do.

We are so glad to be your parents.

Even when my grandson is at his worse, and his parents hold him accountable for his behavior, they cover him with kindness and love.

Everyone makes mistakes.

We will always love you.

Have I ever told you about when I messed up when I was little?

Whatever happens, you are our son.

We forgive you.

Every day, in every way possible, this grandson of mine is wrapped in kindness and reminded of his parents’ constant love. The foundation of security they continually reinforce gives him the confidence to learn to ride a bike, to tie his shoes, to ask for forgiveness when he messes up, and to trust that his parents will grant it.

I want to live with the confidence of a five-year-old, and I imagine you do too.

But how can we do that when parenting a child with special needs constantly exposes our inadequacies? When our inability to provide what our kids need makes us feel like failures?

We do it by imitating my grandson. By listening to the words our heavenly parent continually speaks into us.

In Jeremiah 30:3, our Father says “I have loved you with an everlasting love; Therefore I have drawn you out with kindness when his rebellious children were at their very worst.

In Romans 8:32, Paul describes our Father’s love by saying, “He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?”

In the Old Testament God built a foundation of security under his children. In the New Testament, he reinforced it in the shape of a cross. This security gives us confidence to pursue treatment options, speak up at IEP meetings, connect with other parents, make difficult phone calls, to seek forgiveness when we mess up, and to trust God to grant it.

For the rest of my days, I want to live with the confidence of a five-year-old. Thanks to the example of a little boy who draws cats like a budding Picasso and the word of God speaking truth into my heart, I can. So can you.

Written by Jolene Philo

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 recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

“Virtually Lost” At School This Year

As parents of three kids attempting to tackle kindergarten, preschool and second grade, it’s about all we can do to not throw in the towel this year. The cacophony of sound from multiple devices, kids refusing to mute and yelling, and our tiny dog barking is a comedy show each day. Each of our kids has different needs and abilities, and I’m inadequately trained to do all but the simplest school activities with them.  I only have to manage the chaos of virtual school one day per week, but it’s humbling every time. Often I can’t get signed on, and I question how much my kids are actually learning in this environment.  

From the sensory barrage that is a tidal wave, one thing I do know they are learning is how to deal with adversity.

Unlike our Heavenly Father, as parents, we  aren’t endowed with omnipotent knowledge on virtual meetings, math, or craft projects. In times like these, our deficiencies become sharply clear as we are exposed.

Unfortunately, kids often view our struggles as a complete breakdown of their parents sovereignty. They are used to us having the answers. I’m sure every parent has the memory of realizing their own parents inability to adequately provide. In that moment, a veil has been torn in their childhood reality. 

What a hard reality for a kid to try and understand, but we shouldn’t try and shield them from the fact we are human. But within this new reality are a few teachable moments, the dreaded teachable moment!

So what’s a regular Dad like me supposed to do in these situations? 

It’s a common trope that “more is taught than caught” with kids, and we know every child is watching their parents with a careful eye at all times. This brief window of time we are in virtual school allows my children see what their Dad’s true super power is: not giving up when things get hard.  This is something we often talk about, but being totally out of my areas of competency forces me to put my lectures into action. Woe to the parent who has loaded their teaching with finger wagging one liners like “patience is a virtue!” or “You will thank me one day!” as turn about may be fair play when the kids have you in the fetal position on the floor out of desperation. Even when we (the parental units) are on the ropes, our kids always rally when they see us make a comeback. 

Raising children with disabilities, you are preparing them for the additional hurdles they will always have to contend with. So show up, and dig in. It’s OK to let them know you are struggling, ask them to pray with you and seek God’s help. Jesus prepared his disciples in how to pray.

Prayer is a powerful weapon, and I don’t ask my kids to use it enough. As my kids and I struggle, it often seems to put a wedge between us (parent/child), but if we can see our issue as something to fight together, we grow in strength. Not only do we know that this helps our children cope with issues, it’s also a scripturally sound practice.

Matthew 18:20 talks about how Jesus is with us when two or more are gathered in his name. Although this verse is regarding sin, don’t let a struggle between you and your child become the “sin.”   Call out the adversity together, large or small. This isn’t about shifting blame, but just being real and admitting “we can’t get the iPad to work, AGAIN, and yes I’ll write an email to the teacher letting them know we were trying.”  It’s often in this critical moment where I get a chance to shine in teaching about perseverance. My child is putting their faith in me and for a brief moment I have their full attention, so how do you consciously or unconsciously respond to the struggle?  

Jesus set such an amazing example of patience and reserved strength in the face of adversity. Even in his hardest challenges, he rose to the occasion to set things right and speak truth (think of his temptations by satan in the wilderness). His approaches were infinitely clever, and in addition to loving people fully, his secondary tactics were never the same (think of all the interactions with Pharisees). There were many circumstances that Jesus encountered that were less than favorable, and often people were actively trying to trip him up or prove him wrong.  And in all this, he was leading with love by making time to teach lessons to his disciples.  That is the way we need to approach overcoming adversity with our children. Not despite the hardships we face, but because of them. 

Often on my virtual school days I feel as though I’m on the verge of my own temper tantrum, and having my kids see me walk back from that ledge is a powerful message. We all fall short of the example Jesus set for us, but if I’m leading with love and showing them the struggles of this world are no match for His provision, that is a win. Sometimes they don’t work out the way we planned, but that’s OK. We get extra recess because we don’t get this blessing of quality time back. Then, like magic, the iPad connects to the meeting, which can only be attributed to divine intervention.

Written by Jesse Brubaker

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Jesse Brubaker is a father of 3 little ladies and married to Naomi Brubaker.   He loves food, and is especially skilled at making huge messes in the kitchen. He grew up on a small family run Christmas tree farm in Central Virginia & is now a commissioned missionary working toward moving to France to help bring the gospel to Europe.

Got Hope?

Do you remember the old “Got Milk?” ad campaigns? If so, you likely had the image of some celebrity or athlete holding a glass of milk and sporting a milk mustache come to your mind.

I want to start a new campaign and call it “Got Hope?” Instead of athletes and celebrities, it would feature moms and dads like you and I who have a child impacted by special needs. It would feature people fighting cancer. It would feature people who are struggling for various reasons.  Although, the people would need to be sporting something other than a glass of milk and milk mustaches.

Hope today can seem like a fleeting thing…even in Christian circles.

In the last few months I have seen hope placed in many different things. A couple of popular choices that I have heard is a hope that there will be a vaccine developed for Covid-19 so life can return to normal. The most current hope lies in the elections. People of both parties hope their candidate will win and have high hopes for what their candidate will do if elected. 

As parents of children impacted by special needs, we often place our hopes in doctors, support from friends or family, therapies, an upcoming surgery or some other needed resource.

But what happens if that candidate doesn’t get elected or does and doesn’t live up to the expectations you have? What happens when that therapy doesn’t work? What happens when that cancer treatment doesn’t cure your loved one’s cancer?  What happens when those friends or family aren’t there to support you. What happens to that hope?

 When our hope is in these things, it becomes fickle and changes like the wind. If only there was something constant that we could put our hope in. Oh wait, I guess there is. How easy it is to become distracted or forget where our true hope lies.

In a world that is constantly changing and that can leave you feeling like a grain of sand being tossed uncontrollably by the sea, there is a constant. We have a God that created us in His image. He is unchanging from the beginning to the end of time. He loved us so much that He provided us with a savior. He sent His only son to die and rise again in payment for our sin so that someday we can be reunited with Him in heaven.

So let me ask you. “Got Hope?”

Even as a follower of Christ, it can be easy to get distracted and discouraged. Over the next three weeks,  I’m going to share with you three things that help me when hope seems like a fragile thing.

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Stages In The Parenting Journey Part 3

That last two weeks I have shared about how our current situation with selling our house due to health reasons and going on an epic family adventure bears similarity to many of our journeys as parents of children impacted by special needs. If you missed those, you can catch last week’s article here.

Stage 3 – Movement: First Unsteady Steps Forward

We were able to keep many kitchen tools and most clothing that was a single layer. Nothing upholstered or thick, no couch, comfy chairs, shoes, coats, papers, books, pictures, nothing made of particle board, etc. Anything that we were able to keep had to have every single surface thoroughly washed and wiped down with the mold cleaning solution before packing it. Our hands had to touch and sort every single item. Many dear, treasured, and sentimental things were simply thrown into a garbage bag or trailer for the dump…my wedding dress, photos of the boys’ baby pictures, our engagement night pictures by the pond out front that would soon no longer be ours, art the boys had drawn for me, Christmas stockings made by grandmothers and great aunts who are no longer alive, the china cabinet we bought on our honeymoon.

The items seemed endless and the process took months. Items we had saved money for months or years to be able to buy and finally were able to add them to our house to make it a comfortable, welcoming home became trash. Some items we sold in a moving sale (before the pandemic) for pennies of what they were worth. Two decades of building a home all gone and no insurance money to replace things. It was all consuming, that’s nearly all I did those 3+ months. Every. Day. Sort, trash, wash, cry, repeat. Just surviving through hurt, grief, and managing the day-to-day task of getting through the crisis.

With special needs, you get to the point that either your time limit has expired, and action must be taken immediately, or your research has progressed enough to make a first decision. In an emergency situation, your research may be listening to and solely relying on the information from a single doctor. Or, you may have time to dig deeper, consult with specialists, talk to friends who have been through it, and evaluate your options. But at some point, you have to make a decision and embark on the first interventions – a surgery, special school, therapies, special diet, or some other program. This may last for a week or it may last a year or more. It may work and you can keep moving forward to the next step or it may not, and you have to do more research and try plan B. Your stomach is likely tied in knots and your thoughts filled with hope and fears as you embark on this first step.

Your new reality starts to settle in as to what this new life will look like – the agony of surgery and recovery, follow up surgeries, speech therapy, trach tube, ABA therapy, doctor appointments galore, paperwork, adjusting your life and schedule around the needs of your child with additional needs, and changing it again at the last minute.

All future plans are written in pencil. It all feels foreign, unknown, and overwhelming. 

At this point in Stages 1-3 in the journey, it’s not uncommon to start asking some soul questions like, “Why? Why me? Why us? Why my child? God, why would you do this? Allow this? Why didn’t you protect us from this? God, I thought I was a good person, serving you, doing life the best I could for you, why did you punish me, my child?”

If you find yourself or your spouse asking these questions, it doesn’t mean that you are a bad person or a bad Christian. It is part of the grieving process. It is part of the healing process.

To be continued…

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Stages In The Parenting Journey Part 2

Last week, I began this series by sharing about this epic adventure our family is on. If you missed it, you can read it here. This journey our family is on share a lot of similarities to the journey in special needs and has four stages. This week, I will look at stage two.

Stage 2 – Shock & Research

We realized we had to move if I was ever going to have the chance to heal and recover my health.

Following that demarcating decision there was so much to do. I dove into research, as I’ve become accustomed to doing. What could be salvaged and what could not? What process it would take to save what we could? No one fully agrees. It’s hard to get a straight answer. In fact, there is no one size fits all answer to the situation. Not only is there no simple answer, there’s no straightforward answer.

After a fair bit of digging and lots of reading including books and webpages of specialists, we had to make a decision and move forward even though there was no sure answer. Based on the best information we were able to gather and based on the testing we had had done, we had to get rid of nearly all of our things. Anything that wasn’t solid and completely washable in a special solution that kills mold and breaks down mycotoxins had to go. No, surely not. This couldn’t be the answer. But it was. 

In the special needs journey, an ultrasound may show an anomaly, a medical complication may show up at or shortly after birth, a developmental issue or regression may be noticed or occur between 1-3 years old, there are different demarcating starts to the journey. But they are all followed by a lot of research and figuring out what is next. What can be done? What is the prognosis? What does the diagnosis mean? How to handle the interventions needed whether it is surgeries, medical treatments, therapies, or all of them. Who goes with the child? Who takes care of the other kids? Who works to earn the money? How do we juggle it all? Mom and dad’s learning curves are steep. There is so much to learn, so much that is yet unknown, so many decisions to make.

There often is no one right choice, yet a path forward must be chosen and pursued. You didn’t want to go this direction. You don’t like any of the choices. Is it possible this is all a horrible dream and you’ll awake soon?

To be continued…

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Are You Feeling Stressed?

It's August! What does August bring to your mind?

For me, it's still lots of summer memories. Garden harvest. Sweet Corn. The grass gets a bit brittle underfoot as less rain and hot days combine. And now, school.

Growing up in Michigan, school couldn't start until after Labor Day due to all the farming families. But in Indiana, school starts around mid August. Now on our 11th year of homeschooling, I've come to like starting school at the beginning of August. I use the term "like" loosely. I don't like starting school then, but I find it very beneficial and I like the benefits.

Why?

First, in Indiana homeschool law says you do school for 180 days. I've found that our family takes a lot more days off here and there throughout the year - canning peaches, plums, pears, running errands, appointments, I travel for speaking at conferences, etc. Those days add up, so if we don't start our year early, we don't finish until well into summer weather. Which in the north, is when you can't wait to get outside after the long winter and motivation for school work quickly dwindles for everyone, me included, when the robins start chirping and sunshine beckons.

Second, after several weeks off without a lot of directed activities, which at first is amazing, becomes well, stagnant and idle minds (even if bodies are active) start to wear on each other. So, while I get reluctance and groans about starting school again (afterall, they are boys and not the kind that love academic work), life, routine, and direction helps things run better in the household. Some years I start slow and ease into it, sometimes we jump right in with a full schedule.

This year, I'm prepping for a cross-country RV trip for the next 9-10 months (we leave in less than 2 weeks!) and I'm a little too busy to take on teaching right now, so we are starting with online electives where they'll each complete 1 course this month while I get things around for the trip and we hit the road. That will give me a couple weeks to get up to speed on the learning curve of RVing as well, before we dive into the full school schedule.

Whew, so that was a bit of rambling and sharing what our August looks like. Why do you care? Well, if you hadn't picked up on it, another theme of August is often STRESS! How many of you can relate to that? New things, new teachers, schools, schedules, establishing different routines, early mornings, deadlines, adjustments. For some of our group, it can also be a stress relief - to again have a team of people helping do the heavy lifting of daily care, therapy and interventions. But it often comes with anxiety about how will the new teacher, therapist, etc mesh with my child?This year, with COVID-19, it's magnified - it's not just a new school, a new routine, but school as it's never been done before. And for kids who can't tolerate change, yikes! 

So what is a STRESSED OUT mama, or dad, to do?  That's what August is all about here in the Hope Anew - STRESS RELIEF  or more accurately, STRESS MANAGEMENT!

Because we all know all those responsibilities aren't getting relieved anytime soon, so we we need to pay attention to managing the stress, and yes, stress relief, because as we "manage" it can reduce our stresses in life and we can work the stress out of our bodies.

Who's ready to get some stress relief with me? Woot! Woot!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

 

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

What’s In A Name - Hope Anew

Oh the anticipation, dreams, hopes, excitement, preparation and thoughts that filled our hearts and minds as we eagerly awaited the arrival of our first child! And one of the questions uppermost in our minds…what were we going to name him? To us, a name is very important. Pick the wrong name and the child could be made fun of for the first two decades of his life. We talked through hundreds of names – some reminded Jonathan or I of people we didn’t have fond memories of and we didn’t want our son to carry the same name. Some have common nicknames we didn’t like. Some one of us loved, but the other hated. Some we liked one week, not so much the next. Some were just meh. 

The meaning of the name was also very important, and we believe a child very often grows into the meaning of his name. As we talked through possibilities, one of our favorite names meant “firebrand”. While that could mean he would really make a mark on the world and leave a lasting legacy, it could also mean that he could be a hellion to rear, exciting pain or danger wherever he went. Yikes. Mark that one off the list. It was quite a process, but we finally arrived at a name we both loved and still do.

The process for naming Hope Anew wasn’t too different, except that baby name books were no help, and URLs that were already taken figured heavily into the decision. But, the significance of the name was important. Again, we talked through many possibilities before we came up with and then settled on Hope Anew. As soon as Jonathan said it, I loved it. We checked the URL – available! We put it in with two other top name options and asked friends and family their opinions and Hope Anew won hands down. 

Why did I love it so much upon first hearing it and grew to love it more and more as I continued to think about it?

Here are my reasons:

1. Hope. After the early years of a having a special needs child when I lived in crushing anguish, broken dreams, darkness, and hopelessness, hope was my #1 need. Like water in a wilderness, hope to a downcast soul brings life, renewal, healing, a way forward. Hope is an absolute necessity, yet many find it elusive! Having “hope” in the name of an organization where the support of parents with kids impacted by special needs and disability is the sole purpose and focus…brilliant idea!

2. Hope. Hope points to the true hope we have in life and this world…God, His son, Jesus.  Salvation, certainly, but also His faithful love and care for us here and now. A sure hope. Not the common, modern definition meaning, “a desire” as in, “I hope you have a nice day.” But rather the archaic definition, “trust, to expect with confidence, reliance” and the biblical definition, “confident expectation of what God has promised, and its strength is in His faithfulness.”  This isn’t a, “I hope my son gets better”, “I hope this therapy works” kind of hope. But rather a, “No matter what, God loves me, my child, and I can trust He sees the big picture, has a plan and will work thing together for our good even in the midst of this very broken world.”

3. Anew. Gaining hope again in the parent’s journey. I don’t know about you, but I certainly went through periods of time (years) where I had lost hope. No hope. No future. Darkness, all was darkness. Hopeless. I felt embarrassed, guilty, weak. I learned that is a common part of the special needs parenting journey. You don’t need to feel embarrassed, guilty or weak. Goodness, your life just got flipped upside down. All your hopes and dreams were shattered and scattered, and you have NO idea which way is up, let alone what’s ahead! No one has given you a map with “You are here” marked on it. For Pete’s sake (sorry, Pete, I don’t know who you are or why your name is used for this expression), you’re just trying to figure out how to make it through the next minute of crisis (aka your new life)! BUT, after that yawning chasm of hopelessness, darkness, brokenness, when you climb up and out on the other side, there are new dreams! There is light! There are less crisis, or at least a well-trod action plan for how to handle the next crisis. You can begin to see traces of God’s faithful care of you through that chasm and all those crises. He didn’t abandon you after all, even though it had felt like He had.  And now you gain the reassurance, the knowing deep in your soul, He’ll also carry you through the next one. Hope blooms anew, rebuilt, stronger, steadier on the far side of that chasm. Hope Anew.

What is in the name Hope Anew? Hope, a sure promise we can count on from a faithful God to carry us and love us as we walk through a broken, hurting world and pick us up and grow us up in our understanding of Him after we have lost our hope, vision and dreams.

Oh, and our eldest son – his name is Josiah, meaning “God supports, heals.” You might have some insight into the extra pressures on siblings of kids with special needs. I’d say avoiding “Firebrand” and going for “God supports” was a good call.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Focus On The Good

There is simply an overwhelming number of things that I can genuinely find myself concerned about at the moment. What hasn’t been turned on its head, what hasn’t been pushed to the limit?! My head is spinning just trying to keep up with the changes that have had to happen within our family home to make any learning happen over the last couple of months, and now the changes happening outside the home looking towards summer as lock down eases slowly but surely.

There are days when the concerns could drown everything good out. And it feels as if I run from one problem to quickly trouble shoot the next. Juggling constantly just to keep everything and everyone going as we all struggle to adjust to new ways of having to work, not being able to meet people the way we’re used to, and not having the usual supports and routines to lean on. In the midst of it all, I’ve been asked to take up a paid job – part time thank goodness – and a huge privilege to be offered. I’ll be working in our local high school as their chaplain. One of the things I get involved in as you can imagine is delivering reflections and collective worship opportunities – all virtually at the moment of course. This week I’m putting together (in between everything else on my plate) some thoughts about resilience and staying positive.

I’m looking at a little verse from the Bible, in a little letter called Philippians. After reminding us to take our worries to God in prayer it says this:

‘..whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things’.

Sound advice – written well before mindfulness and CBT became ‘a thing’ here it is – a little note from God simply reminding us how good it is for us to put our focus on the good stuff. Let’s face it, we never need reminding to focus in on the negative! How I need reminding to look for the good in the everyday.

Moving into summer, I want to find some time to document the good we’ve shared during this surreal and unexpected few months. I’ve taken photos of all our new experiences, of us doing our work in new and strange places in the house – of the tent where our youngest has done her school work (when willing), and of all the moments of unexpected laughter and fun. I need to remind myself that there has been good, and beautiful alongside the tough and relentless.

I wonder if we might all jot down our best memories of the month, or draw how we’ve felt when we’ve had a fun day at home together so that, together with the photos, we can put together a family scrapbook of our experience of lock down – reminding ourselves to focus on all that is good in the midst of what has been, for many of us, a really hard time!

Written by Cathy Porter

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

Four Ways To Cope When You Are In Survival Mode

How do we think about the future when we are living in so much chaos? Do you ever feel like you are living from one moment to the next, just taking one more breath and trying to put one foot in front of the other? Sarah and I have been in that place of just being in survival mode. Many parents that we talk to also find themselves there, in that place of just trying to make it through the next second and where making it through dinner qualifies as a long range goal.

 There was an eight day study done on mothers of adolescents and adults with autism. At the end of the study, it was found that their stress levels were comparable to combat soldiers! Some of you just breathed a sigh of relief when you read that. I know this study personally resonated with me. It was a relief to know that I am not weak and I so identified with the picture of a combat vet in a war zone.

Common symptoms of combat stress that soldiers experience are:

• Hyper-startle (An exaggerated response when something surprises you)

• Hyper-vigilance (Being always on guard or super-alert)

• Trouble with focus and/or memory

• Flashbacks (re-experiencing stressful events)

• Hallucinations (seeing, hearing or feeling things that aren’t real)

• Nightmares and trouble sleeping

• Depression and apathy

• Guilt and shame

• Withdrawing or avoiding others

• Irritability and angry outbursts

• Headaches and exhaustion

• Extreme anxiety (excessive fear and worry)

Do any of these sound familiar? If so, how many? Maybe some of these things have become so ingrained in you that you have just taken it for granted that that is who you are.

Hyper-vigilance became a way of life for us, beyond just being a helicopter parent. Back to that image of being a combat vet, Sarah often described our marriage after our journey in disability began as the two of us being in a “fox hole” together as we were constantly on alert and fighting for our family. 

In an article in Navy Medicine Live, it was shared that if not addressed, these symptoms can morph into something else, like PTSD or substance abuse.  

So what do we do when we struggle with one or more of the above symptoms?

First, implement a self-care plan.

Yes, I know  you already know this but have you done it? Stress negatively effects every one of our body systems and leads to ongoing health issues. In this video, I share 5 things anyone can do as they implement their own self-care plan. You can also send me your email address and I would be happy to send you a free e-booklet I wrote with the same information.

Second, as much as possible, implement a routine.

On average, adults are making 35,000 decisions a day. By eliminating some of those decisions through having a routine, you will be better equipped to handle the big decisions and the “surprises” that frequently arise. What are some decisions you can streamline?

President Obama was a fan of this. He once shared, “You’ll see I wear only gray or blue suits. I’m trying to pare down decisions. I don’t want to make decisions about what I’m eating or wearing. Because I have too many other decisions to make.”

Third, find a community or select group of friends who “get it”.

Commander Carrie Kennedy a neuropsychologist and aerospace experimental psychologist shared that the real key to effective management of combat stress and long term adjustment was that veterans have to be in regular contact with other veterans.  Veterans need to be able to talk over difficult  experiences with members of the same unit.

 If you are unable  to find that group who “gets it”,  Hope Anew wants to help. We are in the process of building an online community that will launch later this year. This community will be a “laugh together, cry together, pray together” community. It will provide you with those connections who you can be real with and who will get it. If this something that interest you, again message me and we will be sure to let you know when it is launched.

Finally, as believers we have an eternal hope.

We have a Savior who loves us and we know there will eventually be a day where there is no more crying, no more pain and no more sorrow. As we long for that day, it helps to look for things daily that will instill hope and bring glimpses of joy.

You won’t be able to dream and plan for the future until you can manage the stressors of today. If you feel like you are just in survival mode, what is one thing from above that you can do today that will help with your stress levels?

 If the above symptoms persist, become worse or you begin to have self-destructive behavior or suicidal thoughts, please reach out to a professional immediately for help.

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disabilities on a spiritual and emotional level.

You can follow Hope Anew on Facebook here. 

"Unexpected Blessings" In Review

Sandra People’s book, Unexpected Blessings, is a wonderful and insightful resource and guide for anyone touched by special needs. Whether you have a child with special needs, are an extended family member, or a friend. This book gives an inside look at the spiritual and emotional journey parents of a child with special needs will likely travel.

The title is Unexpected Blessings, but Sandra acknowledges and directly addresses the very real and very hard things about the journey. She ties it all back to Scripture and brings out passages and stories that show how the Bible and Biblical characters are relevant to our daily lives and our journey in disability or special needs. She provides answers to the questions and struggles parents of kids with special needs face and points to the hope and answers that are desperately needed.

“Jesus doesn’t condemn us for feeling a full range of emotions, and we shouldn’t condemn each other. It’s okay to not be okay. There is grace to meet you there.” 

- Sandra Peoples

 Sandra hits on the main topics relevant to the parent’s side of the special needs journey, including: diagnosis, heartbreak, grief, struggle with God and false belief systems, guilt, shame, fear, rest, restoration, daily how-to’s to simplify life, finding a new purpose and path forward, God’s purpose for disability, how to navigate relationships within the immediate family as well as extended family and friends, and the need to build new relationships.  

As the parent of a son with autism and a sibling of a sister with Down’s Syndrome, Sandra writes from multiple perspectives on the issues. I appreciate Sandra’s down-to-earth communication style, authenticity and transparency with the journey she and her husband have traveled.

Yet, Sandra doesn’t stop with the challenges that come with special needs. She has found that both on the other side of the struggles and within the challenges, there are great blessings, unexpected blessings. She not only has found them, she lays out the path so other parents can find them too. 

While the challenges may always be part of life with a child with special needs, those unexpected blessings bring joy to the journey and purpose in the pain. Unexpected Blessings is a wonderful guide that lets parents know it’s okay to struggle, God loves them and is for them, and there are great blessings waiting for them along the way.

“Our suffering has a purpose. It is not accidental or circumstantial. His loving, powerful hand guides us through even the hardest times. It’s on this detour you come to realize the true depth and breadth of God’s love.”  - Sandra Peoples

Written by Sarah McGuire, Co-Founder of Hope Anew