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.

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.

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.

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.

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.

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.

Adventures In Faith

What feels like a very long time ago, I was in a unique situation.  It was an opportunity for me to be used by God as a means to bring peace and comfort to a whole family without me even realizing it.  My husband and I were traveling to visit my grandparents in Florida. We were leaving from our small Richmond airport.  We always look around for people we may know or recognize even when in larger airports, because you never know who else is on the go.  I did not recognize anyone around our terminal, but recognized a very familiar sound.  I turned to my husband and said, “That’s J!”.  He was surprised that I could recognize a child by the sounds and his voice in this busy airport. 

I spotted them in the terminal seating area and went over to introduce myself. I taught at this boy’s small private school for kids with autism in another classroom. The whole family was traveling to Florida for an experimental trial and then of course Disney.  They were nervous and so was J.  I could tell by the sounds he was making that he was teetering on the edge of a meltdown in the middle of the airport.  I feared what a small space of the airplane would feel like for him.  I told the family that if they needed any help while on the plane to come find me and I gave them my seat/row number.  

We all boarded the plane, J and his family were close to the front on the plane, while my husband and I were towards the back.  Not long after taking off, the seatbelt light clicked off and almost immediately J’s sister was at my row.  Out of breath, she quickly said, “Were you serious about helping us?”  I kindly said “Yes” and left my husband to see how I could be of any support to this family.  When I got to J’s row, his mom was sitting next to him trying to calm him down.  The look of panic was replaced with relief when she saw me standing there willing to help.  She simply said “I just don’t know what to do.”  I told her it was totally fine and she could sit with my husband if she wanted to during the flight.  She passed over the reins of her intricate boy and bag of goldfish and breathed a timid breath as she walked back to my old seat.  

J and I settled in for an exciting 2 hour ride to the Orlando airport.  I used lots of distraction techniques to help him stay seated in the small confines of his seat.  I helped him use the tiny bathroom with the VERY loud toilet and wash his hands in a sink unlike any he had used before.  We ordered drinks and snacks and talked about what it was like to be in the clouds.  There were moments when I thought I was going to have a bad situation on my hands, and then we recovered into a safe space.  It really tested my ability to remain calm and loving to him in this environment packed with people.  We landed in Florida and got off the plane and we all reunited in the terminal space, me with my husband and J with his family.  They asked when my return flight was so we could travel together on the way back.  It felt so good to be able to care for this family during the stress of traveling.  It is a plane ride I will never forget.  

I am so proud of this family’s bravery to ask for help.  There are so many times I am hesitant to ask for help because I don’t want my own weakness exposed, especially when it comes to my parenting. 2 Corinthians 12:19 says exactly this- "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. “

I honor this family's ability to recognize their needs and their limits while still stepping out of their comfort zone to travel and stretch themselves. 

Psalm 16:5-6 says, “Lord, you alone are my portion and my cup,  you make my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.” God has given us limits for our good and we must recognize and honor them. 

This family trusted God would provide and they trusted me, a complete stranger.  This trust allowed them to widen the circle of care not only for their son, but for their whole family.  They kept their eyes open to what God’s provision would look like and acted when they needed. The family stuck together and supported each other in this challenging circumstance.  Rather than blaming or feeling guilty, they celebrated the fact they could receive help.  

Now as a mother, traveling feels as exhausting as it must have for this family…it feels scary too.  Will I be able to provide for the needs of my family when we step away from our systems, structure, predictability and comforts of our home?  The answer is unfortunately “no”, I will not be able to provide and protect as I typically do, but God will. Not only that, leaving the comfort zone and relying on God brings growth, family unity and adventure. 

So, plan for God to step in where you know you will not be enough and be ready when He brings unlikely answers to your needs.

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. 

One Word That Can Change Your Year – Part 1

It’s a new year. The start of a new year comes with thoughts of fresh starts, new beginnings, and new or renewed goals. I always look ahead toward the upcoming year with thoughts of what I want the coming year to include for myself and my family and what next steps in life would be good for us.

While that is all true of this year as well, this year has a different feel for me – what about you?

I’m a little less optimistic of where things are headed in our country and world. Christianity is becoming more and more criticized and unpopular. Darkness and evil in our society are growing and becoming more commonly accepted.  Within and between Christian groups, there is increasing division and lack of vision.

The year 2020 was a HARD year for the world and our country. Personally, I’m not expecting 2021 to be easier. I see darkness and chaos growing and spreading. BUT, in darkness, light shines even brighter! Light offers hope in dark times. A lighthouse isn’t built to help ships during the daylight, but during the night. While evil and darkness may be increasing, our foundation, our solid rock, Jesus, does not change. Our hope is secure.

That doesn’t mean we won’t experience hard things, but it does mean we don’t need to be consumed by them. Yet, when we live day in, day out in hard, disheartening, all-consuming things it’s hard to hold onto that hope. So how do we do that?

Personally, 2020 was an incredibly difficult year with a lot of personal loss that was all-consuming for a few months. I made a resolution that I would NOT complain about my new circumstances (I started here) and that I WOULD be thankful (I got this this a little later). Truthfully, I could feel that I was being consumed by negativity and it was my attempt to change that. It was absolutely the right thing to do. And this year, in 2021, I want to take that even further.

 Each year I choose a theme word or verse for the year. This year, my word is THANKFUL! Being thankful requires action and intentional thought. It doesn’t just happen, and it doesn’t come automatically. It takes disciplined thought processes and if it hasn’t been a habit, it takes time and practice to changes those negative, complaining thought patterns and to create thankful, appreciative thought patterns. But it CAN be done, and it will change your brain and your life!

 We read, “Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” in I Thessalonians 5:18. Philippians 4:8 says, …“Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”

Being thankful is an act of fixing our thoughts on what is true, honorable, right, pure, lovely and admirable.

In the Hope Anew Online Community, during the month of January, our theme is Thankful! Each week I’m posting a video about what I’m learning about being thankful and how I’m applying it to my life. We’d love to have you join the Community and a group of parents who “get it” as we grow and learn together through the extra challenge of being caregivers.

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!