Experiencing Joy

This is the day the Lord has made, let us rejoice and be glad in it. (Psalm 118:24 NLT)

Today, yes today my soul is filled with joy.

And although I wish I could say that is my normal, I have to admit there have been many days that I have wasted the gift of the present day by fretting about the future. Oh, today though, I stopped and breathed in the experience of being present in the moment and discovered a bounty of blessings all around me. I was met with gladness, with pure joy that overflowed in my heart… you know the type of joy that makes you just want to get up and dance and skip around the room…yes that type of joy!

It was not an elaborate vacation or hiking in a flowering field, that brought such joy. No, it was sitting in the stands of my son’s Special Olympics track and field event.

The world seemed to have stopped as I took in the scene of over 100 athletes who all had challenges but not one single individual showed the struggle or the pain on their faces. I watched athlete after athlete, my son included, crossing the finish line with smiles and shouts of joy at their accomplishment. Here were individuals that had to persevere through so much to just make it to the event not to mention the physical or sensory obstacles that stood between them and the finish line. It did not matter if they came in first or last, their focus was locked on the finish line. I saw athletes stop running to go to another athlete’s side who had fallen, I saw athletes walking with what looked to be a debilitating limb, I saw athletes in wheelchairs powering through with their hands… all with one goal in mind, to finish!

I leaned further and further into the moment. I embraced the present and I saw modeled right in front of me how to receive the day as the Lord intended and I watched what it meant to be truly glad in it. And at that moment, I heard a whisper in my spirit say “Child, every day can be like this when you receive the day as a gift from Me and focus only on being present in it!” I breathed in again absorbing the lesson my Savior was teaching me at this moment . A lesson on how he longed for me to receive the gift of the day from Him and embrace it with gladness.

But some days are really hard on this earth, aren’t they? Some days the pain of broken relationships, or of illness, or of job loss, or of loss of life can take us down and steal our joy. But our Lord declares even those days, He has made! For me embracing this truth meant I needed to move the truth out of my head and into my heart. Such a journey would allow me to say through the pain, that there is gladness in my heart and rejoicing in my spirit even on such hard days.

As I sat and watch men and women with such gladness pushing through so many obstacles, tears of understanding of what it looks like to rejoice and be glad came to my eyes. And my soul was being transformed to see with the eyes of my heart. At that moment, sitting there on those stands, I was taking a profound lesson on joy.

So let me ask you a question, are you sitting with joy in your heart today? If not, what is holding you back from accepting the gift of the day and truly being glad in it? If you are struggling to find joy through the pain, then would you consider inviting God into your doubt, your hurt, and your fears? Come to Him authentically and let your heart be molded to His likeness so that you can receive every day (even the painful ones) as a gift from Him and experience joy!

Written by Carrie Park

From Carrie’s heart…

By God’s grace, my heart was taken captive by Him and I was brought to my knees as an adult acknowledging my need for my Savior.  God has filled my life as a wife, a mother of five, and as a leader of people. And through this journey, I have discovered a passion of mine to reach, encourage, and inspire others to live a thriving life with our Savior, Jesus Christ. 

​So come, grab a cup of tea settle in and find encouragement from Carrie’s blog Abiding in the Between here.

Determining Where To Start as Your Child with Special Needs Nears Adulthood

Determining where to start as your child with special needs nears adulthood is no easy task. There are legal matters to address such as special needs trusts and guardianship, advocacy strategies to pass on to kids, and much more. The list is full of important things to address. Because your child’s eighteenth birthday is not yet imminent, they may be ignored.

You know what I’m talking about, right?

I’d like to give you a hand in determining where to start as your child with special needs nears adulthood. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process.

#1: Obtain Hard Copies of Your Child’s Medical Records

Electronic medical records are a great invention. They can also be very hard to access when hospitals and clinics update their computer systems. Who knows what will be in place when your child reaches adulthood? Therefore, it’s wise to obtain paper copies by contacting the practices of the doctors and therapists who treat your child. They can tell you how their process works and what costs may be involved. Most likely, you will be sent an electronic file to download and print out. If your child’s medical history is complex and ongoing, you may want to request records every year or two to update your paper files.

 #2: Write Down Your Memories of Your Child’s Medical History

Write down your child's medical history. You probably remember what treatments (for physical, mental, and emotional ailments) your child received, but your child might not. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. Your memories can fill in the gaps in your child’s medical records and shows that your child is a person, not a patient.

 #3: Share Your Child’s Medical History with a Trusted Person

Make two copies of your child’s medical records and history when you print them out. Slip one set in a manilla folder, label it clearly, and file it with your important papers. Package up the other set and give it to a trusted family member or friend. Choose someone who cares deeply about your child (include your child in the selection if at all possible) and will remain involved in your child’s life should something happen to you. Invite that person over for coffee and review the records and history with that person. Meet every few years for to update the paperwork and go over everything again.

Completing these three steps will ease your anxiety as your child nears adulthood. They may also help you build momentum to address other issues related to that important life change, so the transition is as joyful and smooth as possible.

 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.

Feeling a Bit Lost?

Have you ever felt lost? I’m slightly directionally challenged, and before GPS there were times I’d be driving and suddenly I was in a town or city where I hadn’t planned on being. Sometimes that was scary, sometimes inconvenient, and sometimes it was fun as I discovered new places.

I accepted this about myself and used it for my benefit. When I moved to a new location, I’d just drive around, get lost and find my way home (with the help of a map) repeatedly. After doing that a few days, I had a pretty good mental map of the area and would no longer get lost or need to refer to a paper map very often.

The thing is, I had a goal, a destination. Even though I didn’t take the most direct path, I was not wandering aimlessly; although, if anyone was watching, it might have appeared to them like I was. I had a destination in mind, I just didn’t know the route to get there. Sometimes my life feels like that.

There have been seasons in my life where I’ve found myself in totally unknown, unfamiliar territory – like when my son was reacting to every food I fed him and I had no idea what was going on or what to do. Or when it was obvious he had significant developmental delays and major sensory issues that prevented us from going to most public indoor spaces and turned our lives and routines upside down. Not even upside down, it obliterated any type of normality.

It was just like showing up in a town where I hadn’t expected to be and having no idea how to get to my destination. Only, there was no map for reference to find my way. I just had to try one route and see if it got me where I wanted to go. And if it didn’t, try another.

Does this doctor have answers? No. Okay, how about that doctor? No. Well, what about this therapy or that intervention? No answers in western or allopathic medicine? How about in alternative medicine? And I just kept wandering, referencing various research, and trying different routes until we made progress in the direction of our desired destination – the ability to eat foods without reactions, improve cognitive function, and stabilize or decrease sensory sensitivities.

Wandering, feeling lost, and not having clear direction feels uncomfortable. It’s scary. Thankfully, I have a personal relationship with God who loves me, knows all, and sees all.

Even though I may feel lost and not know where I am or how to get where I’d like to be. He knows. He knows not only my practical needs, the destination He has in mind for me, but also what my heart, mind, and soul need along the way. If I stick with Him, ask for, and follow His guidance, not only will I get to the destination He has planned for me, I’ll be a better person when I get there. (If you don’t know Him, I’d be happy to introduce you.)

I’ll leave you with a poem I love from Corrie Ten Boom. If you don’t know Corrie’s story, she was a Dutch lady who helped shelter Jews during the Nazi occupation of the Netherlands. She went to a concentration camp for it and lived to tell her story. So, she knows a bit about dark, hard circumstances in life when you don’t understand and don’t know what’s ahead on the journey. Her book The Hiding Place is a worthy read!

To download your own copy of this poem, click here.

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.

The Holiday Season Can Be Hard for Caregiving Families

The holiday season can be hard for caregiving families. I spent Halloween, New Year’s Eve, and my birthday the hospital with our infant son. Because of his precarious health when he was young, several times we made the difficult choice to stay at home for Thanksgiving and Christmas instead of spending it with extended family.

I didn’t like making those choices. I didn’t want to miss the holiday traditions I’d experienced growing up. On our birthdays, we chose the menu for dinner and whatever dessert we desired. Thanksgiving and Christmas were spent with either Mom’s extended family or Dad’s, the women gathering the day before to prepare feasts that culminated in the most delicious homemade pies I’ve ever eaten.

At the beginning of each holiday when our son was hospitalized or we chose to stay home, I grieved what our young family would miss. However, as we experienced each holiday with people who weren’t part of our extended families, I found pockets of joy.

 We met nurses and doctors who gave up time with their families to keep our baby alive.

Our son received balloons and toys in the hospital.

We talked on the phone with our parents.

We received newsy letters and cards from extended family members.

We spent holidays with friends, sampling their unique Thanksgiving food traditions.

I perfected the family recipes for pie crust and fillings and brought them to share with friends.

Our 15-year-old son, when hospitalized for his final surgery, met his favorite NFL quarterback.

As each pocket of joy became part of my life, I could acknowledge my very real grief about what we missed without being devastated by it. I could move forward in faith, knowing that God would salve what we had lost with what would be gained. I could look forward to pockets of joy.

 The holiday season can be hard for caregiving families, but there are simple ways to insert pockets of joy into them.

Here are a few for you to try.

1. Prepare the same holiday feast as your far away loved ones and eat together during a Zoom or FaceTime call.

2. Schedule a time for extended family to watch a holiday movie and real time chat about it on social media.

3. Distribute care packages, prepared by your family and friends, to hospital workers who are caring for your child during the holidays.

4. Create fun family traditions that can be practiced at home, in the hospital, or wherever else you find yourself during the holidays.

The holiday season can be hard for caregiving families, but pockets of joy can be powerful. Our son is almost 40. When he reminisces about the holidays of his childhood, he doesn’t mention what he missed. He mentions pockets of joy–favorite toys, movies watched together, learning to make pies and other holiday treats. And best of all, having his picture taken with Elvis Grbac, the quarterback of his beloved Kansas City Chiefs.

Written by Jolene Philo

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families.

Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.

To The Caregiver Who Never Gets Time Off

“Be still and know that I am God.” Wait…don’t leave yet! Hang with me for just a bit, I promise this is for you. On my mind and heart this week has been the mom (or caregiver) who never gets time off or time away. I don’t know your name, but I’ve been you and I’ve been praying for you.

You have a child who needs constant care, like CONSTANT, like, you can’t go to the bathroom and have those 30 seconds of peace alone, or drink a warm cup of coffee with a satisfied sigh – a cold sip 2 hours later, with one hand occupied with your child, maybe.

No one else gets it. No one understands. Your child’s needs are so unique and significant no one else is either able or willing to care for him/her for a couple hours so you could just sleep, or breath, or step outside and look at the sunshine. You feel so alone. I feel your pain. I feel the weight you carry. I see the conflict in your soul – you LOVE your child! But you just need a break.

 And then there’s Psalm 46:10, “Be still and know that I am God” - like there’s time for that!? When your child is never still or quiet and you are on duty all day and all night, how are you supposed to find time to be still in God’s presence so you can know Him better? It feels like one more thing on our to-do list that will never get done, doesn’t it? Those impossible things that are forever out of reach.

Have you ever read Ps 46:10 and paid attention to the surrounding verses?

I’ll summarize them for you (because, of course, your hands are full and you can’t toggle to that other screen or grab a Bible right now)…there are earthquakes, mountains crumbling, landslides, turbulent oceans, flooding, nations in chaos, kingdoms failing. Then, “Come, see the glorious works of the LORD…He causes wars to end throughout the earth. He breaks the bow and snaps the spear...” And here it is, “Be still, and know that I am God! I will be honored by every nation. I will be honored throughout the world. The LORD of Heaven’s Armies is here among us; the God of Israel is our fortress.”

Psalm 46:10 isn’t a command to literally be still and spend lots of quiet time with Him. It’s not a command to do something. It is a promise that He is a refuge, fortress, strength and that He has all of heaven’s armies to help address those troubles.

It’s our job to go to Him as our refuge and then “be still.” The Greek word used there for “be still” literally means “sink, relax” it could also be said “stop striving and let go” and watch His awesomeness (aka “know that I am God). Doesn’t “sinking” and “relaxing” (it makes me think of a bubble bath) while someone else who is unconditional love, all-powerful and with legions at His command takes over sound absolutely blissful?

This verse is not a call to do one more thing. It is a call for you to stop striving and to rest in Him, His strength, His protection, His care.

On those days and nights where we feel worn so thin we think we might just wear away to nothing and we don’t even have the energy to think anymore, it’s past time for us to cry out to Him as our refuge, fortress, help, Commander of Heaven’s Armies – it doesn’t have to be eloquent, even, “help” is sufficient - and see what He does.

I’d love to hear about it. I’d love to put a name to these prayers I’ve been praying for “the mom who doesn’t get a break.” Drop me a message, I’d love to pray for you by name!

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.

Caregiver Fatigue

It’s real. It’s literal. It’s pervasive. It’s all consuming. When we haven’t slept a full night, half a night, or maybe not even a full hour at a time in days, weeks, months, maybe even years we get kind of tired, right? Sleep deprivation is serious business.

Yet, who else could possibly believe this is often life for the parent of a child with special needs.

I bumped into a parent of a newborn in a store the other day and they mentioned how tired they were because their baby’s days and nights were switched. At about a week old, that’s not unexpected and we can smile through it knowing these days (and nights) will quickly pass.  It is just temporary. But when that becomes life day in, day out, night in, night out; it really takes a toll on us.

I know when my child’s needs were significant, and I rarely slept for a full hour at a stretch for 18 months. I was exhausted. I was discouraged. I felt so alone. We were relatively new to town and I had no support system outside my husband who was working a regular schedule. I was at my breaking point. Did I mention, I was exhausted? Like really, really exhausted.

I was still going to church many Sundays. The pastor became aware of my exhaustion one Sunday and in the following weeks he would ask me how I was doing. Over the course of those weeks, my answer didn’t change. I was still tired. Yet, as the weeks rolled by and my answer, “I’m tired” stayed the same, the look I got from him changed from caring to condemning.

A few years later, my husband and I were meeting with another pastor regarding Hope Anew and coming alongside parents of kids with disability and special needs and he commented, “I wonder what goes through the mind of a parent when they wake up in the morning knowing what’s ahead for that day.” I replied, “You slept?” He smiled and nodded in acknowledgement of his assumption and the gap of understanding even as he was trying to the best of his ability to understand.

As caregivers, it’s easy to feel forgotten, unseen, not understood because so few people have lived this life and our circumstances. They can’t understand the load we are under and the challenges we are battling through every. single. day and night. We often focus on just making it through the next hour or minute and can’t think beyond that.

I know someone who does care. Who does see. Who does understand. We are not forgotten or alone. These words got me through many a screaming (my baby), crying (both of us), rocking chair night, “He tends his flock like a shepherd: “He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” – Isaiah 40:11. I was a mother with my “young” and it promises that He will gently lead me. That He gathers me in His arms just as I was holding and rocking my little one in my arms. And He promises that to you too.

 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.

Mama Warriors

You know the old joke where you put a sticky note on someone’s back with a message and they walk around ignorant with others secretly laughing at them? As missionaries for 18 years, there have been many times we’ve had a target painted right on our back – by Satan. A few times, when things got unusually bad, I felt that target stuck there and took it off through prayer, prayer, more prayer, praise, thanksgiving, and faith.

Unfortunately, more often I ignorantly went on with my life, pushing forward as a wife, mom, caregiver, missionary, striving to make headway and often having it sabotaged. When you know that sticky note is there, it can be easy to take off. When you don’t realize it’s there you go on ignorantly struggling against all the wrong things.

I'm grateful for Naomi Brubaker and her insights on spiritual warfare . It's real. Yes, it can be over-hyped. But that doesn't make the fact that it is a reality in some instances any less real. Don’t throw the baby out with the bathwater. I’ve often been more guilty of being naïve to the influence and reality that Satan and his minions have in my life, family’s lives, and our circumstances and then I didn’t counter his influence.

If that’s true of you, I’d encourage you to spend some time praying for insight into areas of your life where Satan may have a stronghold or influence and then praying for God’s protection over your lives and booting Satan out. You’ll likely have to do that repeatedly in different areas, different ways, different times and circumstances. He is not a gentleman. Just because you told him to get lost doesn’t mean he’ll never try attacking again. If you’ve claimed Jesus as your Savior, you have the upper hand. Satan can attack (just ask Job) but you can counter and win through prayer!

Prayers that win spiritual battles include some or all of these:

1.     Praise – of God and who He is (SO POWERFUL!)

2.     Thanksgiving – to God for what He has done and good things He has given

3.     Truth:

a.     Acknowledging the reality of sin or wrong thinking in your life

b.     Standing in the truth of the Word of God and countering lies with it

4.     Faith – in God, who He is, His power, His authority, your standing, rights and authority in Him

5.     Word of God – it is your sharpest sword and is what Jesus used against Satan’s temptations in the wilderness. Read it, speak it, pray it! 

Lastly, if aren’t making headway or gaining victory on your own, and haven’t already, ask others to stand and battle with you in prayer! Sometimes it takes an army.

Let’s be mamas who stand up and fight for ourselves, for our husbands, for our kids, for our families, for our friends! We have powerful weapons, we just need to wield them!

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.

Spiritual Warfare

Until recently, I felt like spiritual warfare was a way of over-spiritualizing experiences in life and the World.  It felt like people would claim spiritual warfare for a flat tire or the things that occurred to make someone late for bible study.  It felt hooky to me, but I knew there was truth to this idea of the enemy, at work against what God was trying to accomplish in my life. 

Early on in my time on church staff, some interpersonal conflicts began to impede the ministry work.  There was an unresolved tension and no real reason for these conflicts.  A wise friend/coworker gently guided me through the idea that the enemy was working in these places.  That his goal was to derail our ministry efforts and the harder we worked for the good of God, the harder the enemy would attack.  Until you feel these attacks first hand, it can feel like over-spiritualization of experiences of people giving power to the enemy for coincidences and inconveniences.  

Having the knowledge and tools to fight this spiritual battle is critical to all believers.  We are fighting a battle against an enemy, the bible makes that very clear.  Ephesians 6:11-12 states:  “Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”

I should not be surprised when experiencing these attacks or seeing others experiencing spiritual attacks.  I believe worship is one of our battle weapons in the fight against the enemy. I find the words of worship music can drown out the lies of the enemy or send him running.  There is a song that I love that I feel sums up the protection God has for us, the weapons we have and what we are fighting. The song by Upperroom “Surrounded” starts out by saying clearly that God has prepared us a table in the presence of our enemies, praise and thanksgiving are my weapons. It repeats over and over “When it looks like I’m surrounded, I’m surrounded by You.”  The entire song feels like a defense to the attack of the enemy and it’s true, we are not alone in these battles, we are surrounded by the Spirit of God.  

In learning more about what the enemy is trying to do in my life, directly in opposition to what God is trying to do, I felt ill equipped. Knowing the more I pursued God’s love for me and my family, the more the enemy would be aware of my weak spots and try to enter.  My marriage, my kids, the ministry work I was doing, my friendships and more are all at risk for an opening to be seen by the enemy and to have him step in.  It only takes a little space for the enemy to get into our minds. The hard part is then removing him from these spaces and places in our life.  I am by no means an expert or even remotely equipped on this topic, but have come face to face with the enemy in my life.

Most recently, I remember a few months ago 2 very dark days filled with calculated spiritual attacks.  My kids were impacted, husband, dog, my own well being and the enemy even terrorized my dreams.  These two days were draining and difficult.  I felt like my world was in a delicate balance and one more thing added to the day would send it into complete implosion.  At the end of these exhausting days of what truly felt like a battle, I knew without a doubt that God ruled supreme over all.  He is on his throne and in control.  

We could see in the days leading up to this spiritual battle that tension was building.  We began to put on the armor of God and prepare.  We have a dedicated prayer team that we email out regular prayer requests to and we immediately sent an emergency prayer email giving the details of what was going on.  Immediately people all over the US and world began praying for us.  We guarded our hearts with truth and went into these challenges with immense peace, very little fear and a lot of unknown. How would our lives look different if we called on a group of believers more often to intentionally pray over our needs, our battles and our need for strength in these times.  What would a challenging day, doctors appointments or IEP meeting feel like if all over the nation we were calling on each other to offer critical prayers on our behalf?  I have to believe it would make a huge difference on the orientation of our hearts and potentially the forces at play in our lives. 

Not every day necessitates this full on warfare, but every day has opportunities for the enemy to take hold of pieces of our life.  Keeping close to the tools that will reorient our focus will guard against any effort of spiritual attack.  Some ideas I have to combat ongoing, insidious attacks are playing and worship songs, praying out loud, establishing healthy, regular rhythms with God to remain in step with His will for my life and memorizing scripture.  Being in a practice of pruning away the things in my own life that take away from God’s glory is also important.  Once the enemy is in, it is difficult to get him out.  

I know that the enemy will use any possible place to threaten the work of God in my life. Nothing is safe from him, unless under the protection of Christ. There is another worship song that my daughter and I love that we often turn on loud by Elevation Worship, “See a Victory” . The chorus goes, “Cause my God will never fail. No, My God will never fail. I’m gonna see a victory, I'm gonna see a victory…” It goes on repeating this truth, that we WILL see a victory because God never fails. His power is perfect and stronger than any demon or Satan. Be aware of the enemy’s schemes and be ready to support those who are impacted by his evil plans. I know my family will come under attack again and hope the body of believers will circle around us in offering a protective blanket of prayer. We will remain firm in the truth that God wins, always.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Thriving When First World Problems & Caregiving Problems Dominate Our Daily Lives

First world problems and caregiving problems are dominating my life right now. They’ve made re-entry after a month-long trip to celebrate my husband's retirement rather rocky. Here are a few examples of what’s been happening.

The installation of our new heating and cooling system required punching numerous holes in our walls…including my office. The work was supposed to be completed while we were gone, but won’t be done for weeks or possibly months.

That’s a first world problem.

Hospice re-evaluated my mother after she had bouts of major confusion and agitation while we were gone, but she still doesn’t qualify for their services.

That’s a caregiving problem.

The morning after a heavy rain, we discovered a leak in the new addition just as a workman came to deal with a backed up basement drain.

First world problem followed by first world problem.

My mother keeps asking when she gets to move in with us. I keep telling her that as long as work delays continue and our walls are pocked with holes, it’s not safe for her to move in.

That’s a caregiving problem solved by a first world problem.

That final confluence of first world problems and caregiving problems got me thinking about how they’ve impacted my life in the past.

Our newborn son’s condition at birth was an age old problem. His diagnosis and surgery at birth caused a host of complications and subsequent surgeries. Those complications were first world problems.

Had our son been born in a different country, not to mention in a different day and age, he wouldn’t be alive today. In other words, first world solutions for his condition caused first world problems and caregiving problems that our family dealt with for years.

During those years, all my thoughts, all life revolved around my son.

Was he getting sick again?

Did he need another surgery? Another test? Another procedure?

Could I pump enough milk to nourish his body?

Would he ever sleep through the night so we could sleep through the night?

Only rarely did my focus move from the immediate, the urgent, and the life-threatening to a broader perspective.

Only rarely–very rarely–could I move beyond myself and our son and see the blessings God had bestowed through our first world problems.

Our son was alive.

Many surgeons had the training to correct his birth anomaly.

His prognosis was good.

We had a supportive network of friends and family.

We had excellent insurance.

We had good jobs and understanding employers.

On the few occasions when I found the wherewithal to reflect upon the goodness of our first world problems in combination with the caregiving problems they caused, my heart beat faster. My breath caught. Tears flowed.

I saw the goodness and wisdom of the One who will wipe away every tear from our eyes in a world where there will be no more death, mourning, crying or pain (Revelation 21:4).

I saw, not the first world and the problems it creates,

nor my caregiving world and its problems,

but the world to come.

The promise of that world is where you and I can find the hope, compassion, strength, and endurance needed to thrive when first world problems and caregiving problems dominate our daily lives.

Written by Jolene Philo

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.

The Practice of Breath Prayers

When life is swirling around feeling like it's out of control and we are completely exhausted, feeling bad about our personal health, spending too much time worrying, dealing with the same challenges day after day after day, it feels almost insulting for people to ask or talk about rest.   There is no space for rest.  The moment I take time to “rest” things fall more apart. Let’s be honest, even trying to use the bathroom is an ordeal sometimes, and a shower...please, not happening, right?  If there was a way to slip in effective moments of rest without doing any preparation, and without truly removing oneself from the needs of life, this could be a lifeline we need.  

There’s a practice I was introduced to in a mentoring class at our church called “breath prayers.”  This technique has helped me effectively recenter myself and get the lasting moments of rest I need throughout the day.  Engaging in the practice of breath prayer is an opportunity to exchange my stress and worry for peace with God.  While it is taught to be more of a full body meditation of breathing and relaxing the areas of our body we are holding stress, I find myself using breath prayers all the time without dedicating a place and time for quiet.  Engaging in this intimate communion with God is effective, and God ministers to us in exchange for the moments we turn our thoughts to Him, even if we are keeping a watchful eye on our kids.  

There is solid science behind taking time for the practice of breath prayers.  Breath prayers increase oxygen to our brain as our sympathetic nervous system is engaged when we are feeling nervous, anxious or stressed. This is our fight or flight response. Our body’s typical response when the sympathetic nervous system is engaged is increased heart rate, respiratory rate, sweating, interruptions to our digestive system and more. Intentionally working against these negative responses by engaging the parasympathetic nervous system is the science behind breath prayers. The parasympathetic nervous system promotes the maintenance of the body at rest.  Controlled breathing, paired with scripture, is what helps our body engage the parasympathetic nervous system and reconnect with God, rest and continue to press on with his strength and provision. 

Spend some time building your breath prayers and memorizing short scripture verses that speak to you in your times of need.  Breath prayers typically have 2 parts, an inhale and an exhale.  

Some scripture I love in the context of a breath prayer are:

Matthew 6:8-- (inhale) Father, you know (exhale) what I need.

Joshua 1:9 --(inhale) Do not be afraid (exhale) do not be discouraged (inhale) for the Lord my God (exhale) is with me always.

Psalm 46:10 (inhale) Be still (exhale) and know I am God.

Once you have chosen your breath prayer scripture,  inhale and exhale very slowly as you recite the words of the scripture to yourself. Breathe in deeply and slowly through your nose and feel your lungs fill completely. Try to focus on deeply filling your lower lungs/diaphragm so that your stomach expands while your upper chest remains still. Then slowly breathe out. The exhale should be the longest. Empty your lungs slowly and fully. Meditate on the words of the scripture as you breathe. Repeat several times over and over calming your body and mind more and more with each deep, intentional breath. 

I like to close my breath prayers with one final breath prayer--

(inhale) I am entrusting my _____ to you, Jesus (exhale) and let go of ______.

In a small matter of time, you have intentionally and effectively calmed your heart, mind and body, while connecting with God.  Even without changing your situation, or leaving the things at hand.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

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.

Disney with Ease

My family moved to Orlando Mid December 2020 and have tried to soak in all the fun that this town has to offer. Being cognizant of the unique needs of our children and our special visitors,  I have become aware of places that go above and beyond to make sure we have an amazing experience. One of those places is Disney.  Disney can be the most magical place on Earth or meltdown city.  Disney has a fabulous team accommodating guests with special needs.  They have a pass called Disability Access Services(DAS).  These accommodations are great and simple to get.  Having the needed accommodations during your day at the park can be vital in keeping the entire family happy.  Having a simple conversation with Guest Services at the parks gets the things in place that are necessary for the DAS pass.  Take a look at Disney’s website for the specifics about the DAS pass. Your first stop once you enter the park is Guest services to begin this conversation.  Here is a review of the accommodations my family has benefited from at the Disney parks and how we navigate a day smoothly:

(Universal Studios has similar accommodations, but I have had fewer visits to their parks.)

DAS Line access:  For kids who may have trouble waiting in long lines, especially in the sun, this accommodation is really helpful.  This is NOT immediate access to the ride, but rather you have flexibility to wait in other areas with a return time.  My family uses the Disney app to look at the wait times throughout the park.  I do this several times leading up to our visit to the park to get an idea of what rides are typically busy at which times during the day of the week we are planning to visit. Once in the park, we immediately check-in with the ride with the long wait time to make our return reservation time.  The cast member setting up your DAS pass can reserve this wait time for you when you meet with them.  The DAS wait time typically reflects the amount of time you actually wait in the line. 70 minutes in line means 70 minutes to use in other areas.  While we have this reserved wait time, we ride rides that have less than 20 minutes posted wait time which is tolerable for my daughter if in the shade.  We also grab a snack break, watch a show, shop or see a parade. Before long, we are ready to ride the longer wait time rides without any trouble.

• When you arrive at the park, choose your wait time for the longest time and check with Guest services.  

• You can only have 1 DAS ride reservation at a time.

• Check in with a DAS pass before breaking for lunch and dinner.  While you wait for meal your wait time will quickly pass

• With 2 adults, one can check in for the DAS line, while the other begins to walk to a show, lunch, parade etc.  We found that it was a challenge for the kids to see the ride and not ride.  

Rider Swap-  When traveling with little people or kids that may not enjoy a ride, Disney has a rider swap program. It took us a minute to figure out what this meant, but essentially, if one parent has to wait back with a child who can not ride a ride, that adult and 2 others can again without waiting.  No one misses the fun!   This will work in conjunction with your DAS pass.  You simply have to ask for a rider swap when you check in to ride the ride after your DAS wait time.  You can have a rider swap time and a DAS time at the same time as well.  

Cards VS magic bands-  My family uses the park issued cards rather than magic bands.  We clip all the cards together and manage our DAS Lines and rider swaps with the cards separated.  The reason for this is that it allows flexibility for the ride access.  We have not navigated the park with magic bands, but feel like it’s an added expense we don't need.  The cards can be swapped around between our family if one child quickly changes their mind about riding on a swap.  

Dining-  Our family finds this down time vital for a smooth park day. We want our kids to take in the healthy calories at these meals and actually rest.  It takes time away from riding rides, but allows for over stimulated, exhausted kids to get a needed break.  Making a dining reservation in advance is important, so when you reserve your park day, be prepared to make your dining reservation.  In-park restaurants are affordable, less chaotic, air conditioned and allow for everyone to rest for a bit before getting into the park excitement again.  If sit down dining is not an option, be ready to make a mobile order.  This option has less wait, but is not as restful for everyone. You can make your mobile dining order several hours in advance to be fully prepared.  Disney is proactive in addressing food allergies.  They ask that you inform them upon arrival at the restaurant of your dietary needs. They have options to accommodate common food allergies.   Disney also allows for guests to bring in their own food if allergies are an issue into restaurants and the park, simply inform the cast members at the bag check and the restaurant.

Relaxation areas-  These areas have been really helpful for my family.  Map out where these areas are in the park when you have a conversation with guest services.  These spaces are air conditioned and quiet.  An over heated, over stimulated child can take a needed break in one of these areas.  We split our group to allow for maximum quiet time in this space.  But while we are not together, we avoid the really desired attractions to do as a family. 

Snacks and hydration-  We have a medium soft sided cooler that fits perfectly under our stroller.  We load it up with ice packs (not bags of ice) and water.  I bring electrolyte powder to add to the drinks as needed.  Another snack tip for park days is freezing yogurt pouches and apple sauces the night before and adding them to the cooler.  They will either be a nice cool treat at the park or just the right temperature at the end of the day.  To minimize germs, I opt for individual servings of snacks which are easy to pack and throw away.  The ice packs come in handy when kids need to be cooled down quickly.  You can refill water bottles with water and get ice at any of the restaurants free of charge. We try to leave lunch with full water bottles!

Walking and mobility- A day at Disney can quickly rack up mileage walking around.  We have walked between 7 and 9 miles on our park days.  Being aware of the amount of walking you may be doing is important.  Taking a stroller even though it might not be used is helpful. It’s a great place to stash your stuff, but also gives kids a break from this walking.  My 8 year old daughter has been caught riding in the stroller and even took a nap in it one park day when she was fighting a migraine. 

If physical mobility is a challenge for your family, Disney has access lines that avoid the stairs that the typical lines have.  Cast members are happy to assist you through these lines.  The park itself has very few stairs and where there are stairs, there are ramps close by.  Navigating the park is easy, but exhausting.

Weather- When planning your trip, be aware of the temperatures in Orlando.  The summer starts early here and the hot temps last longer than we might like.  Choosing to come to Disney in the cooler months can make a really enjoyable visit.  Summer rain storms are typical daily, so check the weather forecast for the day and plan to be inside a show or ride when storms are in the area.  Also get the outdoor rides out of the way before a storm rolls in.  With any luck and planning you may be able to stay dry and watch a great show! Be warned, if you go inside to avoid a storm and leave your stroller outside, it will get soaked!  Look for covered stroller parking in those instances.

Souvenirs- Disney will get you on the merchandise, It’s all really nice stuff, but it quickly adds up, especially if you multiply things by 3 like I have to for my 3 girls. Avoid waiting till everyone is exhausted to shop, it makes it challenging to make clear decisions.  Also, make a plan for what shopping will look like.  You can scope out your store and souvenir in advance to avoid lots of shopping time.  Each day we went to the parks, the kids wanted a Mickey balloon.  The day we went to Magic Kingdom, the balloons were everywhere and the kids got me to say yes, but I told them we didn’t want to carry them around all day.  They didn't forget and at the end of the night as we were leaving the park, I was standing in line for the balloons.  I had no idea how much the balloons cost, but I was committed.  Never have I spent so much money on balloons, but also never have I seen a balloon last over 2 weeks.  Make a plan with buying souvenirs and stick to it! This is always a tension point for my crew. 

Things to bring and not into the park- Stroller, battery operated fan, baby or hand wipes, extra clothes, sunscreen, hand sanitizer, refillable water bottles.  I don’t bring a purse to the park, but use a fanny pack.  It is easy to ride all the rides with the fanny pack secure around your waist, but a purse is more difficult and not safe to leave sitting in a waiting stroller.

Most of all, have fun.  Disney is a really magical fun place to make memories for the whole family.  

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Hold On Tight

If I could go back in time to those days before his birth, and have a chat with my pregnant self,  I would tell myself this about the parenting journey I was bound for:

1. It will be different than what you are imagining.

2. You will know, but not quite understand, the moment that you lock eyes that first day.

3. You will also instantly know that you are his person.

4. You are strong enough to rise to the occasion. 

5. You were meant for it, and you’ve got this.

6. God will lead you. Hold on to Him tightly.

7. Stop yourself the very first time you read what other babies his age are doing and your stomach drops, because he isn’t doing it yet. Just rock in that glider and stare into those beautiful brown eyes.

8. If you google that missed milestone one time or a million times, and get lost in your mind with worry, that will do nothing to change the outcome. Instead look at how intently he is listening to your voice as you read Goodnight Moon in his sailboat nursery. The worry is useless, and the outcome is not anything to fear.

9. When he begins to roll his toy cars in such a way that you feel it is less play and more some type of visual stim, a word you won’t learn for a few years yet, think about how happy he looks.  Make note of these things, but don’t fret. Instead, choose to enjoy the smile on his sweet little toddler face.

10. When you notice incredible skills happening far too soon in comparison to others, just marvel in it. Don’t read every article written about it, wondering why or what it means that he can do it.  Your nights will be far better off spent sleeping while you still can.

11. At a certain point there will be no sleep, so grab every wink.

12. When the sleep gets hard, you will manage. 

13. In case you already forgot number 4, you are strong and capable.  

14. Your child is also strong and unimaginably capable. Perhaps the strongest, most resilient person you’ve ever known. You’ll see.

15. When he struggles to sit quietly on the mat at library story time, just go to the park instead. 

16. When he runs from you and others say things like, “He’ll come back, just call his name.”, trust your gut and RUN.  He’s not coming back.

17. Start looking for the angels sent to meet him on his path. They are truly everywhere you turn. You will be amazed. He will recognize them right away.

18. You will see him form the most enduring bonds with these people.

19. Don’t waste a moment’s thought on those not meant for him.  He will recognize them, too.  

20. He will have some difficulties, yes.  Who among us is granted a life without them? Focus on the many triumphs instead. 

21. He will be completely misunderstood, as will you. Ignore this. Make no apologies and overlook the judgement of others. Live these days focused on the audience of your one heavenly Father.

22. He will also be completely embraced and accepted. It will bring glee and immense gratitude to your heart each time.

23. You. Will. Be. Enough. Don’t question that fact, but know that your faith, family and dear friends will also carry you when you need them.

24. Begin this prayer immediately. Pray for God to lead you.  Tell Him that you’re listening and ready to follow his plans for your little boy.

25. Walk next to your son, hand in hand, through it all.

26. You’ll learn soon that he’s come here to teach others things like compassion and empathy and humanity.  He’ll teach them some about fonts and logos, as well, but that won’t make sense to you for a couple of years. 

27. Your baby is perfect. One day when he is 8, he will look into your eyes and plain as day, give you every answer you’ve been searching for.  His self-awareness and self-acceptance will put your mind at ease in an instant and bring a calm to what at times will feel stormy.  It will be one of those beautiful moments in life that you want to capture, that you want to freeze inside of. 

28. Always remember that this is his life to live. He was sent here with a unique purpose just as you were. Remind yourself of that in the times when you feel like you must find all of the answers.  

29. You will grow through this time.  Your heart will grow. Your empathy will grow. Your heart’s desire to help other children will grow even bigger than it already was, and now with an entirely different level of understanding.

30. Lastly, it will all be okay.  I promise.  It will be better than okay.  His life will be amazing and full and happy and fun and he will know the abundant love of his adoring Mother.

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.

"Status Quo"

The phrase “status quo” has popped up a few times recently in conversations and in things I have been reading, which got me thinking about my feelings regarding things being “status quo” or not.  Status quo is used to describe a normal state of affairs, not bad, not good, but mostly unchanging.  When people describe their life as in a state of status quo, it’s describing their normal.  Although this sense of normalcy has dramatically shifted over the past 12+months and settled into a new place and feels like globally is shifting once again.  This idea of things feeling like they may be in a state of status quo hit with a stinging reality as I reflected on my life.  What would the status quo look like for me? What would the simplicity of a day to day routine that felt very much normal be? What would it be like to not be navigating the ups and downs of crisis but just moving through the normalcy of life?  Maybe, status quo is not fantastic, but maybe it is not filled with as many curve balls as my life feels like it has. 

I have heard it said that Jesus came to disrupt the status quo.  I can see this in the way he gave most of his attention to people who were not regarded as important.  You see this further in his disruption of religious laws that became the focus of worship rather than God.  And who the Jews expected to be the messiah, was not Jesus.  They expected a powerful ruler, not a baby born in a manger.  I think the feeling like things are not status quo is ok.  I think navigating the change and up’s and down’s of life that don’t feel routine or normal are ok too.  It’s how we respond to these unsettling circumstances that are important.  It feels like this is what I signed up for, things not ever being normal as we serve and trust God more.  

As we continue to navigate life that feels disrupted by circumstances, family, children, jobs or joblessness and more here are a few big picture thoughts to come back to:

Let GOD be GOD- Many times I remind myself “You have faith in God for a reason, let Him be in this with you.”  We must remember who is in control ultimately and not try to sabotage what God is doing in us and through us.  Don’t let fear take away from the growing that God is doing in these times that feel upside down, but actually pull closer to God and ask him to show you more clearly the purpose. The familiar story from the Gospels of Matthew, Mark and Luke of when Jesus calms the storm is a good reminder of the vast power and control the Lord has over everything. 

Jesus  replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm. The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!” Matthew 8:26-27

Keep moving forward- The tendency to let fear to hold us in a state of indecision can be problematic.  Keeping momentum even when things are not what we had hoped is important.  Every morning before school, my girls pick out a mantra from a list we heard about from Big Life Kids.  Many mornings these simple statements the girls pick for themselves stick in my mind as I go through the day. Two common statements chosen are “ My imperfect action is better than no action at all” and “I have grit and I won’t quit.”.  These simple statements remind all of us to move forward through the hard and continue on.  Building a mindset of positive, forward motion through the things that don’t feel normal is healthy.  

The Lord encourages us as he encouraged Joshua to keep moving forward and lead the Israelites into the promised land - “Be strong and courageous, do not lose hope, for the Lord your God is with you.”Joshua 1:9

Be generous-  The idea of generosity can be molded into many different domains of our time, resources, words, etc, but in the end- the act of giving ends up returning some vital things when we are in a season of chaos.  A few of the benefits of generosity noted in the Pyshalive article are that generosity improves our sense of purpose, deepens relationships and connections, and reduces stress.  All of these benefits are what we are looking for when we are seeking a sense of status quo that we can not find.  In these circumstances where we feel like the bottom is falling out we must remember where our heart is rooted.  

 “Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal.  But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal.  For where your treasure is, there your heart will be also. Matthew 6:19-21

It feels like most days my family is living our life on the edge and I don’t think we are that unusual in those feelings.  We have weathered unexpected changes, and detours and sit in the present place trying to put the pieces in order to make sense looking ahead.  Looking behind us feels like a trail of wreckage that we call our life.  The only thing keeping us together is that we are graciously provided what we need for today. When I feel like my life is moving towards chaos, I remind myself of what is true and practice the things that bring me back to my root system of our loving God.

Written by Naomie Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

To The Caregivers

She was three, he was seven and I was in crisis.  I was overweight, overtired and overwhelmed.  I felt so sick and old. 

I felt all of this, but I so rarely reflected on my state of being that I almost didn’t notice that I felt this way at all. I was just not on my own mind in any way. I would read about “self care” and think it such an indulgent luxury.  I would get so taken aback at the mention of it, as if I was making a choice not to care for myself.  Of course I didn’t feel that was the case.  I was allowing my hectic circumstance to be the fall guy for that.  I was so deep into my role as caregiver that I couldn’t see how my body was struggling.  My child was being tested for vitamin deficiencies and receiving appropriate supplements.  Both of my children were eating pretty clean diets free from inflammatory foods, artificial ingredients and they were eating organic choices as much as possible.  I was not.  I was treating my exhaustion with food, and making all of the wrong choices. I was convincing myself that I deserved the joy that overindulging in food brought.  I earned it.  Eating was something I looked forward to.

There was no time for a spa day, or even to enjoy reading a novel.  There was time to get through the day, most of the night, and then crash into my bed, but not before “medicating” with some yummy meal or treat eaten way too late and consisting of absolutely terrible choices.  With zero help in the childcare department, jogs or trips to the gym were also out of the question.  So, this is where I was.    

Then the pandemic hit our world and our world hit the pause button.  Many people began to overindulge and neglect physical wellness in an effort to deal with all of the emotions living through the fear a pandemic brought on.  I suddenly wasn’t alone in this struggle.  So many people started  “medicating” with food as I had been.  Comfort food and sourdough bread recipes were all over social media, and many people soon felt ready to reign it in.  This was my window of opportunity.  Something was awake in me, finally.  I did a deep dive into wellness with others who had gained extra weight during the pandemic.

God led me to a plan that really helped give my body the respect it deserved. 

Encouraged by a family member, I dove in.  I still couldn’t get to a gym, and I still was running wild until far later in the evening than typical, but when I ate I was eating vegetables and meat.  I was choosing fruit and eliminating all of the things my child had eliminated years before.  I cut out those same artificial ingredients and inflammatory foods.  I began taking the supplements my body needed and I started pulling myself out of the fog.  I started loving on myself as I had always done for my children.

Quickly life became easier.  I found I could handle the hectic moments with more grace for myself and my family.  I realized that the way I love and care for my children, is the way God loves me. I was not caring for my God-given body as I should have been.  It is such a gift to be given a body in the first place.  Isn’t it?  

So many lightbulbs started turning on for me.  As much as, my role as caregiver to my children requires, as does my role as caregiver to myself.  It’s easy when you’re navigating special needs or medical fragility within your home to completely forget about yourself.  It’s not at all a case of that horrible phrase “letting yourself go”.  In my experience, it was a case of just completely forgetting my health needs altogether in the flurry of life.  We can’t do that.  We can’t get lost in the”figuring it out” and the “making our way through”.  We need to try to honor ourselves and our bodies and our children will be the beneficiaries.  First off, we’ll hopefully improve our chances of living longer.  Next, when we, as caregivers, feel well and healthy, have energy and aren’t flooding our system with terrible food additives and sugary junk we can care better for those we love.   Finally, I think when you’re taking exceptional care of what God has trusted you with, your heart feels lighter and you can begin to fulfill the role you have before you. 

Our homelife has calmed significantly in the last year.  There are many reasons for that. We’ve found appropriate treatment and a proper diagnosis for our child, we’ve settled more comfortably into this role of caregiver, and we have now turned our eyes toward caring for ourselves in the same way we feverishly care for our children.  

Everyone is the caregiver to something or someone.  It may be a child with special needs, it may be a beautiful golden retriever, and it may be a dear friend. May it always be that we are caregivers to ourselves first and foremost.  If you have forgotten yourself for a bit, as I did, it is my hope that reading this will serve as a reminder of what a gift our bodies are and of how deserving you are to feel outstanding in yours. 

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.

"Write Everything Down"

“Write everything down,” my adult daughter said.

I stared at her, equally amazed by her wisdom and my epic fail to practice what I’ve been preaching for more than a decade.

When I spoke at special needs and disability conferences–pre-pandemic of course–parents would ask how to be effective advocates for their kids. My top 3 tidbits of advice were always:

1. Let people in.

2. Don’t take no for an answer.

3. Write everything down.

How had I forgotten my own best advice this spring while advocating on my mother’s behalf? I’m blaming my oversight partly on the pandemic (it’s about time it was good for something), and partly on my inability to see that effective special needs advocacy practices are equally effective while advocating for the elderly.

I tore myself away from staring in amazement at my daughter–when did she become so wise?– and went into my office where I began to write everything down as she had advised. That was about 2 weeks after Mom’s health issues began, and the timeline of events was still clear in my mind. At the time this post was written, the timeline had stretched to 4 weeks and counting. If my daughter hadn’t said to write everything down when she did, the increasing number of events would have become muddled and my recording of them inaccurate. Not good.

Because effective special needs advocacy practices can be applied effectively during elder care advocacy, and vice versa, let’s see how the other two tidbits of advice can work for both populations.

1. Let people in.

Once I wrote everything down, I sent copies of the document to my 2 siblings. I add to it a couple times a week and send the updated document to them again. Why? First, it eliminates the need to send lengthy texts to keep them in the loop. Second, they send me feedback about what they believe next steps should be. Today’s update led to my brother and I scheduling a meeting we’ll attend together on Mom’s behalf. Our sister, who lives in a different state, suggested language to use during the meeting. By letting them in, our advocacy is united and more powerful. We do our loved ones, whatever their ages, a great service when letting people leads to more effective advocacy.

2. Don’t take no for an answer.

As a lifelong rule follower and people pleaser, this one’s hard for me. I trust and respect people in authority. I don’t want to question them. If I was the only person involved, I probably wouldn’t question them. But this isn’t about me, just like your advocacy on behalf of your kids. It’s about them, their care, their quality of life, and respecting their wishes. So when I detect inaccuracies or hear something stated from an incomplete perspective, I push back. I provide my version of events and share my documentation. Which leads back to where this post started.

3. Write everything down.

Mom will need my sibling and I to be her voice, her advocates, for the rest of her life. Depending on your children’s special needs or disability, you will be their voices and their advocates, at least for a time. By writing everything down we are equipping ourselves to speak well on their behalf, for however long our loved ones require our advocacy.

I’ve added a final tidbit of advice to my list, though it may not work for you. Would you like to know what it is? Listen to your daughter. She’s one wise woman!

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'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 Shell Of Many Colors

“He is not here, for he has risen, as he said. Come, see the place where he lay.”

(Matt., 28:6, ESV).

This past Good Friday I had my son with me for an overnight visit. Being a now divorced dad, there are many challenges that naturally come up, but one very important one is how our autistic son will be supported in his Christian faith. For my part, I have sought out a new church with a special needs ministry that we could attend together, try to keep up with Bible reading when we can, and of course celebrate the holidays.

For a change, I decided to attempt coloring Easter eggs with him on my own for the first time. It might not seem to be any big deal to parents of typical kids, but in our house doing something as trivial as coloring easter eggs can be a big job. While I know my son understands what coloring Easter eggs is over all of these years, he still struggles with the motor control to independently control and dip the eggs, and of course he deals with sensory issues which encourage him to want to stick his hands in and splash the water. But I still felt it was an important bonding activity for the two of us, so I purchased the eggs and the kit, set up everything as orderly and neatly as I could, and we endeavored to color some eggs. Since he is non-verbal, I also set up his Ipad with his communication app next to the setup, so that he could tell me what colors he wanted to use. When it was all ready and I called him over to the table, I of course took the obligatory picture of him pointing to the colors that he liked best.

An activity like this could truthfully be pretty quick, as I just ask my son the colors he likes, assist him in dipping them into the coloring, and lay them down to dry, simple. But as people of faith, I want him to know that this is about more than just doing something fun. The eggs represent rebirth and new life, and more specifically the act of Jesus coming out of the tomb on Resurrection Sunday. I paused to reflect though on what this  meant for me and my son doing this together, as that visual of emerging from the egg had bigger connotations in that moment. I thought about this hopefully being the beginning of the end of the covid pandemic, and our whole population coming out of quarantine. I also thought about my son’s own condition as a non verbal child, and how him being able to use his device to communicate his wants was also a way of him coming out of the shell of his speech impediment. 

Watching the eggs dry, I gazed as the wet colors settled on the shells, forming their intricate swirls and patterns, contemplating their uniqueness. Just like each one of those eggs, they are unique and beautiful in their own way, manifesting the colors of God’s love, wrapping around the hardened shells of doubt and fear. It is a wonderful reminder that everything can change in the blink of an eye, as soon the shells will break, and the tomb will open, revealing the glory that was hidden inside.

Written by John Felageller

Follow John on his website: www.johnfelageller.com

Which Christian Parenting Resources are MOST helpful?

In the last blog post, You’re Grounded!!! I alluded to how the first few years of Jonathan and my parenting journey and how we were doing discipline was NOT working. We were following the best of the parenting classes from Bible school and church and books recommended to us and getting a kid who became angrier and angrier. We knew something HAD to change…and it was us and how we were parenting, not our kid.

Today, I share with you:

1. Resources we have read and tried

2. Resources that dramatically changed our and our kids’ lives for the better

Disclaimer: our kids are currently teenagers. We are in the midst of this parenting journey. We are learning too. Currently, our teenagers are delightful. They are a joy and pleasure to be around (most of the time!). We do not fit the stereotypical picture of regular teenage/parent conflict. I’m loving this age and stage and hope this type of relationship continues. However, we don’t know how our kids will do in adulthood or what choices they’ll make once there or at any point on their way there. We pray for wisdom as we continue on this journey.

The following resources are loosely listed from least helpful to most helpful for our family. We’ve read and studied more, but these are the ones that came to mind.

Resources we read, studied, &/or applied early in our parenting journey that we may have gleaned some from, but didn’t get us where we wanted to be in our parenting:

1.     Don’t Make Me Count to Three by Ginger Hubbard

2.     Growing Kids God’s Way

3.     Dr. James Dobson’s books

4.     Child Training Tips by Reb Bradley

5.     Love & Logic by Jim Fay & Charles Fay

6.     Give Them Grace by Elyse Fitzpatrick

7.     Shepherding A Child’s Heart (the anger management/training/maturity ladder was helpful) by Ted Tripp

Resource that we think are excellent, the last 2 have heavily influenced our parenting:

1.     Parenting by Paul David Tripp

2.     How to REALLY love Your Child by Ross Campbell

3.     Sally Clarkson’s books (there’s more I need to read!!!) & podcast

4.     Sharing Love Abundantly In Special Needs Families by Gary Chapman & Jolene Philo

THE #1 most helpful and robust parenting tool we have found:

As a side note, you can listen to our podcast interview with Jim and Lynne here. What resources have been helpful to you in your parenting journey?

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!

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Hope Anew is an Amazon Affiliate and as such earns income from the affiliate links listed above.

The Parenting "Long Game"

PARENTING can be a loaded word- it’s personal and relational and it comes in long stages.  There is joy mixed with fatigue and confusion.  It seems like, as a parent, we are often experiencing the polar ends of emotions.  Moments of hope are fleeting and followed by despair.  We are on mountain tops and sinking into the valleys in a matter of minutes.  You can read many parenting books and blogs, listen to podcasts and talk to professionals, as well as trusted friends and still feel like you are in the dark.  Sometimes we end up more overwhelmed than before we started looking for answers.  All this messiness is because parenting is personal and our kids are each unique. Additionally we bring our own mixed up parenting perspectives into the relationship to add to the emotional confusion.  Even within a family unit, parenting multiple children can look very different.  

On top of all of that, we take the outcome very personally.  We place the value of our parenting in the goodness of our children.  Am I an effective parent because my kids made it through dinner in a restaurant without making a scene?  Did my children exhibit kind, respectful behavior at a friend's house because I taught them all the polite things? And on the negative side of things; is my child going to struggle forever because I am failing in parenting?   The idea that our worth as a parent is a result of their good or bad behavior is FALSE.  The two ideas are not connected.  The true source, of both our worth and our goodness, comes from the Father, the same is true for our children. 

I have 3 girls, ages 8, 6 and 3, and parenting each of them the same way would be ineffective and unfair.  Parenting becomes personal because each child is unique. We have done a lot of ground work to establish the rules and values of our family.  Although the house rules and family values are the same, the way they have learned and experienced this varied.  We have gone through a lot of hard work to get here and now the lessons are learned through them trying out what we have taught them and feeling the consequences of their actions and independence. 

Take a look at the long game of being a parent.  The goal is not that they put their toys away, or tidy up their room, or have impeccable table manners.  The goal is that they have self-respect, compassion towards others, take responsibility  and can positively contribute to their family, community and the world through their own unique giftings. 

This long game perspective makes parenting highly relational. 

I felt like my family had a season where we were losing our relationships for the rules.  There was very little joy or fun and it was a battle over who was more persistent. The result was negative and loss of the relational ground we needed to be building with our daughters. Slowly that stage of parenting has shifted as well as our perspectives and their needs. 

What feels like we are in a hard phase that will never end; slowly, we are actually moving to a new place almost overnight and there is light.  I have appreciated the 4 phases of parenting outlined as Commander, Coach, Counselor and Consultant by “Focus on the Family”.  I can recognize that when it felt like a battle ground in our house, we were likely in the middle of the commander stage with 3 young kids. And now we have progressed to some coaching and some commanding as the kids have aged.  Don’t lose the relationship over the rules, don’t linger too long in the a stage, push yourself and your child to stretch when the time is right.  Don’t be afraid to return there when needed. Always remembering, the character and care of our heavenly father is being extended to us in these stages as we navigate life as well.  

After months of being “off” my parenting game due to moving, COVID, virtual school and so many other disruptions I feel like I have had to go back to the “commander” stage more than I would like.  I try to balance this with intentional time to build the relationship individually with each of my kids.  Today, we had a longer day of chores, but focused on the relationship as I took two daughters to get their nails done and later made a secret dessert for the family with another.  I feel more effective as a parent when I have made these relational efforts with my kids.  And I feel more effective as a parent when I make relational efforts with God. 

Invite God into the struggles and joys of parenting by prayer and worship.  He wants to share in this process, as He is a supportive, loving, present father.  

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

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.