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.

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.

There Can Be Respite in the Sleepless Storm

It’s fitting that my son’s preferred sound to sleep with is a booming thunderstorm.  Let’s just say, college all nighters don’t even hold a candle to the all nighters my handsome little guy and I have endured together.  His sleep, among other things, was greatly impacted by the effects of his autoimmune condition called PANS/PANDAS.  Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows. 

I spent hours singing hymns and James Taylor songs and I’ve Been Workin’ on the Railroad on repeat, to name just a very few, sitting crossed legged in this sweet child’s darkened bedroom willing him to fall asleep.  For a long while, my husband singing Kumbaya in a slow, droning voice over and over and over again, was the only way to peace.  In a room adorned with the darkest black-out curtains they sell and the most realistic and loud sound machine on the market, I would pray for my child's body to calm long enough for him to find rest.  And once the calm came, I’d steal away for a few winks, knowing that I’d soon be back snuggled with this little love of my life, trying to calm him back to sleep once more.

Looking back on those days, having made huge strides in the sleep department, I realize how little concern I took in my own well-being. 

Isn’t that what a mom does? 

We do what we have to, and when it comes to our children, we take on the task at hand no matter what that task asks of us. Those wake-ups that sometimes came as early at 3:45am, were followed by full and glorious and nerve-wracking days.  Days full of coffee and giggles, meltdowns and play dough, hope and worry, and the endless shuttling back and forth to preschool, gymnastics, speech, OT, or whatever that day held.  Then, those days would circle back to Kumbaya once more.

As my son has gotten older, some of those struggles, both day and night, have worked themselves out. Some we have found our way through, some are still a daily struggle, while others are brand spanking new.  I have, though, started to make a point to acknowledge the amount of stress I’ve been functioning under over the past 7 years.  I’ve begun work to heal the parts of me that this has all piled up on.  It is my nature to smile through anything I face. I often proclaim that all is well, or give a good old, “We’re hanging in there!” with a grin and a giggle.  I think in many ways that has helped me to endure the heartache of it all.  It has helped me to conceal the gallons of tears I’ve shed over watching my child navigate such difficulties, though concealing them is entirely unintentional.  What those smiles haven’t helped is in finding any relief from the stress I’ve been under.  

Self-care was a term that kind of bothered me, as if it was this luxury others were afforded, or even an indulgence.

Who has time for that? How could I even squeeze that in?  I’ve learned now that we all have time to care about ourselves and I can squeeze it in.  It is not indulgent to care for the mother of my children.  It is vital.  It can be as small a start as just taking a multivitamin. It can be scheduling an appointment to walk around a park for an hour all by yourself.  It can be reminding yourself of the interests you had before things changed in your life.  I have found that visiting with the old me, for a moment or two each day has done wonders for my stress level.  I wish I had made a point of it sooner, when I felt buried in worry.  It’s okay, though, because it’s never too late to pause and re-evaluate the state of our experience.  We can find peace even during these hard moments in life, even during the loudest booming thunderstorm.

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.

Rejoice To Do Good

Rejoice to do good.

Those words from Ecclesiastes 3:12 have been easy to obey this month with the release of Sharing Love Abundantly in Special Needs Families, which I co-wrote with Dr. Gary Chapman. Yeah, he's the love languages guy. So I have plenty to rejoice about these days.

But when I was a kid surreptitiously carrying my dad's urinal to the empty in the church bathroom or feeling the stares of neighbor kids as I wheeled him around the block, the command to rejoice to do good stuck in my craw.

After the birth of our first child, my reaction to the rejoice to do good thing would have been to throw my Bible across the room. If I'd had time to read my Bible. Which I didn't thanks to sleep deprivation, and atypical baby care like pumping breast milk 6 times a day to pour down his feeding tube, and way too many 240 mile round trips from the remote town where we lived to the doctor's office.

 All of which prevented the throwing of my Bible. And proves that Romans 8:28 is true. God does work all things to good for those who love Him and are called according to His purposes.

 Back to rejoice to do good thing. My point is this.

 Throughout my childhood, when Mom, my siblings, and I cared for Dad we were doing great good. My husband and I also did great good caring for our son during the hard first years of his life. In both situations, we had no idea we were doing good. We were just doing what loving families do–we were taking care of our family members who couldn't care for themselves.

I'm sure there were people who pointed this truth out to Mom, but it went over my daydreamy head. I think there were people who pointed out this truth to my husband and me, but we were too sleep deprived and stressed for it to register. Not to mention that hearing such a sentiment from a person who is hasn't raised a child with disabilities or special needs would have been hard for me to swallow.

I, however, am a parent who raised a child with special needs. I am like you, so I can speak this truth into your heart. You are doing great good.

You do great good every time you race your medically fragile child to the doctor's office or hospital.

You do great good when you stand calmly beside your child when he has a meltdown at the grocery store.

You do great good when you advocate for your child at IEP meetings and annual reviews.

You do great good work when you change your adult son's diaper or your adult daughter's menstrual pad.

You do great good by showing up at church with your entire family on Sunday morning.

You do great good when you drag out of bed every night to comfort your child.

You do great good by biting your tongue and choosing words of affirmation instead of frustration.

You do great good when you look into your child's eyes and say, "I love you. You are worthy. You are made in God's image."

In these ways and a thousand million others every day you are doing great good.

Though you may not see all the good now, one day–in this world or the next–you will. In that day, you will be amazed by the good God has accomplished through you and through your child. This is why we can rejoice to do good even in the hard days of caregiving. We can rejoice to do good because as believers and children of God, we stand upon God's promise to use our present situation for eternal good. We know, without a shadow of doubt, that the best is yet to come. 

Now to Him who is able to do far more abundantly beyond all that we ask or think,

according to the power that works within us,

to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.

Ephesians 3:20–21 (NASB)

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. Most recently, She co-wrote 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.

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