2 Mental Health Red Flags for Caregiving Parents
2 mental health red flags for caregiving parents? Are you kidding me? I’m waving at least a dozen red flags every day!
That would have been my reaction to the title of this post when I was in the thick of caring for a medically-fragile kid. In fact, that would have been my reaction as recently as a month ago. But I had a lightbulb moment between then and now.
Written by Jolene Philo
2 mental health red flags for caregiving parents? Are you kidding me? I’m waving at least a dozen red flags every day!
That would have been my reaction to the title of this post when I was in the thick of caring for a medically-fragile kid. In fact, that would have been my reaction as recently as a month ago. But I had a lightbulb moment between then and now.
The lightbulb moment came while I facilitated a class for teachers about post-traumatic stress disorder (PTSD) in kids. We were discussing childhood symptoms, also known as behaviors, displayed by traumatized children. The class members wanted to know what kinds of behaviors are indicators that the trauma has evolved into PTSD.
“It’s not so much the kind of behavior,” I explained, “because most kids display these kinds behaviors at one time or another. “Red flag indicators for me are the intensity and duration of the behavior. An example would be what happens after telling 2-year-olds they can’t have a cookie. More than likely, a 2-year-old will throw a tantrum. However, 2-year-olds living with unresolved trauma and PTSD will pitch magnificent fits that are long and loud. That’s intensity.
Similar tantrums continue to occur whenever these 2-year-olds are denied anything long after the child should have moved past the terrible 2s. That’s duration.”
The words had barely come out of my mouth before the lightbulb turned on: Intensity and duration of behaviors can be 2 mental health red flags for caregiving parents, too.
I mean, let’s face it. Parents raising kids with special needs and disabilities face plenty of attacks on their mental health, including traumatic stress. Such as the stress of overwhelming, unrelenting caregiving demands. The trauma of sending a child off to surgery or hearing the heart monitor flatline. The stress of trying to manage unmanageable behaviors. The trauma of a receiving a difficult diagnosis.
Stressed and traumatized parents who want to be proactive about their mental health can do so by assessing the intensity and duration of their own reactions in certain situations.
For example, it’s normal for parents of kids who were hospitalized to avoid visiting hospitalized family and friends for a while. But it’s not normal if that parent has a racing heartbeat or sweaty palms while driving by a hospital. That’s intensity. It’s also not normal for that reaction to continue years after a child’s final hospital stay. That’s duration.
It’s normal for parents to get tired of taking children with autism to weekly behavioral therapy. But it’s not normal to be utterly exhausted after therapy to the extent that the parent wants to go to bed and pull the covers over their heads once the appointment is over. That’s intensity. It’s also not normal for that level of exhaustion to persist for several months or longer. That’s duration.
Here’s one more. If you have received negative news regarding your child via the phone–it could a difficult diagnosis, behavior or academic concerns from school, or even that an in-home care provider can’t make it again–you may experience a sense of dread when your phone rings. That’s normal. But dealing with the dread by refusing to answer the phone (intensity) for a week or a month or more (duration) is not.
By applying these 2 mental health red flags for caregiving parents in your own life, you can be proactive about your personal health. If you decide to seek a therapist, this post about how to find a trauma therapist can help you locate a mental health care professional where you live.
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.
A 19 Year Old Revelation
I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation. I recently realized that even though I thought I had it "all together", I really don't. I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.
Written by Leigh Ann Kaman
I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation. I recently realized that even though I thought I had it "all together", I really don't. I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.
This revelation was uncovered recently during a conversation with my therapist. I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years. This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful. This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks. While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note: Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)
My therapist has spent time getting to know me and what parts of my life have been difficult. In my last session, I began telling her about Ben. I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and how I respond to him now. As I talked I could feel my anxiety rise. I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.
After she helped me calm down and relax, she made a pretty stunning observation. She said "I believe Benjamin is the cause of your permanent anxiety. You have PTSD and I think you are still dealing with the grief this has caused in your life.”
I was shocked. I am thankful for him and I clearly recognize how he has blessed my life and others. I feel equipped to help other special needs parents deal with a new diagnosis. I even write about all the ways that Ben has expanded my life. But, my therapist thinks that I have unresolved issues? How could this be?
In January of 2002 the diagnosis for Ben was determined about a week after he was born. As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible.
As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis.
Now as I sat in the therapy it began to make sense. I have a special needs son. A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live in a constant state of “waiting for the other shoe to drop” and can at times feel the emotional spiral.
I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful. I know that it’s relentless and traumatic in nature. But, I know where it comes from now. This awareness will also help me manage my anxiety. I know that I can "fix” some things for him, but I can't address it all.
Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day. We want to do the best for our children and be "on top of our game". But, we also have to recognize where we need support. I have a great therapist now. I have also joined Facebook groups to find parents who “walk my walk”. I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how.
As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times. Make sure to ask for help and be willing to accept it.
Written by Leigh Ann Kaman
Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion.
Myths of Caregiver Stress
Jolene Philo outlines myths that caregivers commonly believe when they experience compassion fatigue and caregiver stress. This is an excerpt from the March Hope Anew Disability Podcast, “Does My Child Have PTSD?”
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.
Four Ways To Cope When You Are In Survival Mode
How do we think about the future when we are living in so much chaos? Do you ever feel like you are living from one moment to the next, just taking one more breath and trying to put one foot in front of the other?
Written by Jonathan McGuire
How do we think about the future when we are living in so much chaos? Do you ever feel like you are living from one moment to the next, just taking one more breath and trying to put one foot in front of the other? Sarah and I have been in that place of just being in survival mode. Many parents that we talk to also find themselves there, in that place of just trying to make it through the next second and where making it through dinner qualifies as a long range goal.
There was an eight day study done on mothers of adolescents and adults with autism. At the end of the study, it was found that their stress levels were comparable to combat soldiers! Some of you just breathed a sigh of relief when you read that. I know this study personally resonated with me. It was a relief to know that I am not weak and I so identified with the picture of a combat vet in a war zone.
Common symptoms of combat stress that soldiers experience are:
Hyper-startle (An exaggerated response when something surprises you)
Hyper-vigilance (Being always on guard or super-alert)
Trouble with focus and/or memory
Flashbacks (re-experiencing stressful events)
Hallucinations (seeing, hearing or feeling things that aren’t real)
Nightmares and trouble sleeping
Depression and apathy
Guilt and shame
Withdrawing or avoiding others
Irritability and angry outbursts
Headaches and exhaustion
Extreme anxiety (excessive fear and worry)
Do any of these sound familiar? If so, how many? Maybe some of these things have become so ingrained in you that you have just taken it for granted that that is who you are.
Hyper-vigilance became a way of life for us, beyond just being a helicopter parent. Back to that image of being a combat vet, Sarah often described our marriage after our journey in disability began as the two of us being in a “fox hole” together as we were constantly on alert and fighting for our family.
In an article in Navy Medicine Live, it was shared that if not addressed, these symptoms can morph into something else, like PTSD or substance abuse.
So what do we do when we struggle with one or more of the above symptoms?
First, implement a self-care plan.
Yes, I know you already know this but have you done it? Stress negatively effects every one of our body systems and leads to ongoing health issues. In this video, I share 5 things anyone can do as they implement their own self-care plan. You can also send me your email address and I would be happy to send you a free e-booklet I wrote with the same information.
Second, as much as possible, implement a routine.
On average, adults are making 35,000 decisions a day. By eliminating some of those decisions through having a routine, you will be better equipped to handle the big decisions and the “surprises” that frequently arise. What are some decisions you can streamline?
President Obama was a fan of this. He once shared, “You’ll see I wear only gray or blue suits. I’m trying to pare down decisions. I don’t want to make decisions about what I’m eating or wearing. Because I have too many other decisions to make.”
Third, find a community or select group of friends who “get it”.
Commander Carrie Kennedy a neuropsychologist and aerospace experimental psychologist shared that the real key to effective management of combat stress and long term adjustment was that veterans have to be in regular contact with other veterans. Veterans need to be able to talk over difficult experiences with members of the same unit.
If you are unable to find that group who “gets it”, Hope Anew wants to help. We are in the process of building an online community that will launch later this year. This community will be a “laugh together, cry together, pray together” community. It will provide you with those connections who you can be real with and who will get it. If this something that interest you, again message me and we will be sure to let you know when it is launched.
Finally, as believers we have an eternal hope.
We have a Savior who loves us and we know there will eventually be a day where there is no more crying, no more pain and no more sorrow. As we long for that day, it helps to look for things daily that will instill hope and bring glimpses of joy.
You won’t be able to dream and plan for the future until you can manage the stressors of today. If you feel like you are just in survival mode, what is one thing from above that you can do today that will help with your stress levels?
If the above symptoms persist, become worse or you begin to have self-destructive behavior or suicidal thoughts, please reach out to a professional immediately for help.
