Families with a child affected by a mental/neurological disorder often live a chaotic and stress filled existence. Often, the struggle is invisible to the public. Unknown to even neighbors, a series of chronic storms erupt inside the home. Furthermore, stigmas make seeking support challenging. Parents struggle to give time to all of their children as well as their marriage Siblings may resent the extra attention to the affected child. It is all too easy for fracture to take place and the results to each member can have short and long term consequences.
You want to help but how do you do it? Here is a list of suggestions that can get you started.
Food: It connects us. But good news-you don’t have to be a gourmet chef to share it. How about ordering a pizza? One of the best dinners shared with us was ham and cheese sliders that we could warm up and grab quickly on our way to the hospital. Truthfully, anything that offers a quick bit of nutrition and satisfies, feeds the stomach and the soul. Always make sure you are aware of any food restrictions (especially true if the child has a sensory issue.)
Gift cards. Medical bills quickly consume a budget. Sure, there are payment plans but when you have at least a few going, there is not much left for any extras. In addition, schedules can become packed with doctors appointments and unexpected health related crises. Furthermore, siblings often feel left behind as time and money are consumed quickly. Special family outings often disappear. Gift cards for a movie theater, McDonalds, and other “extras” are an appreciated treat. Gas cards are also beneficial.
Offer to take siblings for a few hours. Respite is necessary for all family members. Routines often become interrupted, noise levels escalate, conflict can be frequent. These factors contribute to a stressful environments. Can you offer your home as a quiet place of refuge? Renting a movie, supplying snacks, sharing skills, or even letting kids play on their electronic devices or read in a peaceful place is a gift. If you are more adventurous, try a park, ice skating or the beach.
Care for the affected child: This suggestion requires a familiarity with the child and their needs. Sometimes a new environment can be helpful. Other times, it may create further anxiety. If you can provide this option, it sends an affirming message to the child that they are capable of being loved on by those outside their family. To the parents, it sends an empathetic message.
Put together a gift basket: Parents naturally tend to invest their time, energy, and resources toward the health of their child. As a result, they are left “empty.” This affects their own emotional and physical well-being. It also leads to strained marriages. How about a gift basket filled with bubble bath, hand lotion, special treats, rental movie gift card, coffee shop gift card, teas, bottle of wine? Put on your creative hat and see what happens!
Share resources. Let’s face it, receiving money from others can be awkward. Yet, it may be the very thing that would help alleviate stress. Could you ask to pay a bill? Could you pay for a sitter? There are creative ways to share financially while not taking away dignity or creating an uncomfortable situation.
When a child fights a physical illness, it often leads to a rally of support. The visible symptoms communicate the urgency of support to others. Unfortunately, mental illness, addiction, neurological disorders do not always present in a way that draws attention. The family struggles silently. When we are aware of others’ needs, we become better advocates and neighbors. And we are transformed in the process.
Words barely express the ways your actions have breathed life into my daughter. Movement into unknown territory involves risks. Your willingness to do that does not go unnoticed. Connecting with her isn’t easy. I know that. As you know, she’s not one of those outgoing social butterfly types. She’s an observer. In addition, her mental illness, makes identifying and controlling emotions challenging. She realizes the impact of her actions and words, yet, managing the whirlwind within becomes difficult at times.
By inviting her into your space, you moved beyond the walls of fear that easily keep us from engaging. with those who seem different from ourselves. Sometimes the fears are rooted in real experiences,yet, each of us has our own narrative. You have demonstrated to others that learning how to give and receive support is a significant life skill. There is no “us” and “them.” Everyone faces their own struggles.
We, her parents, are walking in unfamiliar territory. We have gleaned much about the way our society values others as well as the assumptions aimed toward families who don’t capture the “All American Dream.” Stigmas and fear feed the perceptions of parents whose children’s disabilities appear “fixable.” When behavioral and emotional issues manifest themselves, the journey becomes a lonely one for the whole family.
You have witnessed the storm of emotions blow out of her with a breath-taking pace. Out of her mouth, harsh words may have been hurled in your direction. Yet, you saw that she was more than those utterances. The open invitation to your home created a refuge and gave her purpose. How could you have known that her desire to conquer an 8 hour day of cognitive and emotional difficulties was rooted in the reward of spending time with your family? Thank you for loving her unconditionally.
To those unsung heroes at school, you are appreciated more than you can grasp. Her struggles impact our whole family. As parents, we transport, cajole, and encourage her to embrace the school day. But the reality is that some days, we all feel wiped out my 9:00 am.
How do you fight the clutches of anxiety/depression which attempt to pull your child back into bed? Some days, the nuances of battle were apparent. She arrived with eyes, swollen and puffy. But you welcomed her nonetheless and let her sit. Sometimes, you even provoked a smile and a laugh. You far exceed your job expectations.
Thank you for loving my child. Whether you welcomed her with a simple gesture or invested time with her, your kindness reaps a harvest in her soul.
This post originally appeared here: https://themighty.com/2017/05/a-letter-of-gratitude-for-loving-my-child/
Without warning, I found my mental state rapidly shifting. For one week in late March, it seemed to spin out of my control. Increasing anxiety gripped my soul, its force building stronger each day. Suddenly, the anxiety transformed into a deep depression. Never had I felt such a heaviness pressing upon me. After a few days, the weight lifted.
Making sense of it left me pondering: Why now? I had been treated for anxiety and depression for the last 15 years. For most of that period, my moods remained stable. Any shifts lasted only a few days. Through medication and therapy, I learned to manage my illnesses. However, this time, I felt blindsided; the symptoms appeared unexpectedly. Even though I was exhausted, the experience left me puzzled.
Read the whole post at http://mudroomblog.com/soul-care-unexpected-descent-depression/
Words barely express the ways your actions have breathed life into my daughter.
Movement into unknown territory involves risks. Your willingness to do that does not go unnoticed. As you know, she’s not one of those outgoing social butterfly types. She’s an observer. In addition, her mental illness makes identifying and controlling emotions challenging. She realizes the impact of her actions and words, yet, managing the whirlwind within becomes difficult at times.
By inviting her into your space, you moved beyond the walls of fear that easily keep us from engaging with those who seem different from ourselves. Sometimes the fears are rooted in real experiences, yet, each of us has our own narrative. You have demonstrated to others that learning how to give and receive support is a significant life skill. There is no “us” and “them.” Everyone faces their own struggles. Read more at:
Upon giving birth to my first child, I was determined to be “that mom”-the one whose children would never fall prey to the sneaky dangers surrounding them. The phrase “My kids would never do THAT” found a place in my mind.
What is “THAT” exactly?
Electrical outlets? Covered (nevermind the fact that I once found a way to stick my finger in one as a toddler). Cords to the blinds? Well, we don’t have any. Toxic substances? Locked away in the childproof cabinets that I can’t even open sometimes. As a new parent, I scoured the lists for precautions to make sure my child would be safe. Of course there were some things that I didn’t worry about because in my mind, “What kid would really do that?”
Like plastic grocery bags? The ones that my child would never put over his head? Yet, in his state of natural human curiosity did it anyway?
Like toilet screw covers? Those small white caps that just happen to fit the size of a toddler’s mouth perfectly? In fact my daughter managed to fit one in her mouth (don’t go there) while I was in the bathroom getting ready to preach at church. As she looked up at me gagging, my instincts sprang into action. Fortunately, I noticed and quickly resolved the situation. And then it was on to leading worship an hour later.
Ahhh, the naivety of parenting. Actually, there is good reason for that.
We’ve Never Done it Before
A toaster comes with a manual. In fact, even a Happy Meal toy comes with one. But parenting? Nope.
Sure there are books out there to help. Social Media groups beckoning you to join their posse. Conversations with people who have “been there.” But, ultimately, there is nothing to prepare you for the moment by moment process for raising a human-one whose DNA is unique from any other. Add in family history, genetics, personality traits, lifestyle….and it is a learning experiment. We hope and pray for the best.
In a sense we all become “That Mom.” Most of us truly want what’s best for our kids. We become schooled in how to keep them safe; trying to keep a balance between not being concerned enough and being accused of being a helicopter parent (I’m afraid of heights so that probably wouldn’t describe me).
Just when you think you have prevented catastrophes, some other strange quirk pops up and catches you off guard.
Prolapsed rectum? Yep. Experienced that.
Body suddenly covered in hives? That too.
How about Teen onset Epilepsy? Mental illness? Cholesteatomas (I had to look that up too) in the ears leading to chronic ear infections and destroyed ear bones? Triple yes.
It’s Not All About Us
What we learn as we parent is that we can set our eyes on being the most competent parents ever, yet we are not in total control. That demands perfect people or robots.
The beauty is that God has trusted us with a most humbling responsibility. We get to participate in it while resting in the assurance that no matter what happens these are God’s children (Psalm 139:13-14, Jeremiah 1:5).
Upon leaving the hospital with my firstborn, I remember thinking, “I really get to take him home?”
There is nothing that can fully prepare you for this journey. And that’s O.K. Because this parenting thing isn’t all about us. We are partners with their Creator; the One who also created us and knows us intimately.
We will make mistakes. Unexpected circumstances are a given. You are not alone. In the words of a once popular song from a teen Disney Musical, “We’re all in this together.”
I asked myself this a few months ago. After years, consisting of very long days, of family struggles with mental and medical conditions, the season began to change. At first, I dared not believe it. So many times, there had been brief glimpses of light as we forged through the darkness. But those moments seemed to fade quickly. Once again, we would be left trying to find our footing and walk forward together: my daughter, my two sons, my husband and myself. To say the relationships between us were strained would be an understatement. When one person in a family struggles, everyone is affected.
The dynamics between us does not resemble the picture I had in my mind before my husband and I started a family. My daughter began treatment for bipolar disorder at 9 years old (she is now age 15). My older son (age 18) has battled anxiety and depressionalong with a host of unexpected health concerns along the way. The youngest son (age 13), whom I call the “comic relief,” manages mild anxiety. None of their conditions define them, but they do affect the climate of our home. It hasn’t always felt like the refuge I hoped my husband and I would create. We have tried to initiate traditions, affirm each other’s strengths and attempt to carve moments of time together. We have sought out therapy, utilized resources and developed a support system. Humor has even found its way in. Yet, we couldn’t always keep the storms at bay.
Truthfully, the winds, at times, seemed so forceful I wasn’t sure I had the strength to resist them. My husband and I could be a strong force together; yet each of us developed our own methods of survival. We also felt as if the storm was invisible to everyone else. Mental illness carries a stigma. There are plenty of opinions regarding how to “fix” your child. “If we would just . . .” Meanwhile, the unpredictable nature of episodes and triggers as well as the financial stress and school concerns mount. And in the midst of it all, you are trying to sustain your marriage, pay bills and pray for endurance, provision and healing.
It occurred to me one day that this long season of storms may have finally transitioned into a season of calm. When you are so used to living in survival mode, you don’t always realize the storm has weakened. Weeks no longer seemed packed with doctors’ appointments, evaluating medications, financial distress, school battles, emotional burnout. It may be the beginning of a season of restoration. On the surface, a calm after the storm sounds welcoming. But, truthfully, the implications are daunting.
How do you begin cleaning up the mess?
Branch by branch, piece by piece. I remember a horrific storm that erupted suddenly about 10 years ago. When it was safe, we made our way outside to access the damage. Thankfully, our belongings remained intact. However, our street and our yard were filled with tree limbs and branches scattered everywhere. In order to move toward restoration, you must begin cleaning up the mess one branch at a time. It may take a while. And I’ve learned (reluctantly) that’s OK
Restoring our relationships with each other will take time. One branch at a time. I often wonder how my kids would relate to one another had our situation been different. I will never know the answer. It would be tempting to dwell on the “what ifs,” but that would require looking back. We are heading forward. The medical concerns have not resolved. The winds may indeed return. We have found space to breathe and rest. We have found our footing once again and set our eyes on God; who is in the business of making things new. I find inspiration in the promise given to the Israelites:
See, I am doing a new thing!
Now it springs up; do you not perceive it?
Isaiah 43:19 (NIV)
Originally published at http://mudroomblog.com/cleaning-up-mess/, this post also appeared at https://themighty.com/2016/10/when-things-calm-down-parenting-children-with-mental-illness/
Sometimes, life leaves your brain full and your mouth empty.
A season of life two years ago encompassed one of those times for me. The thing is-these seasons don’t just end with a nice and tidy resolution. They don’t leave us with an instant epiphany of profound theological insight. Rather, we are left with a reminder-:spiritual, physical, emotional- that we are humans wrestling with the realities of living in a place of in-between.
It is not yet Heaven.
The days of December 2013 quickly filled up with preparations for Christmas as well as doctor’s appointments. My eldest son became increasingly ill. A periodic problem with an upset stomach evolved into a daily issue. Watching your child feeling sick packs a punch to the stomach and the heart. The immediate desire is to fix it.
Yet, beginning in October, we sought an answer from many physicians and no one could fix it. How can that happen? We live near Chicago; a mecca of renowned and state-of-the art medical centers. A gold mine of wisdom on the complexities of the human body. Yet, each visit to a different specialist yielded more questions. We just wanted answers.
Emergency room doctors ruled out some things But nothing made him better. Daily, he made the trek to school with virtually nothing in his stomach except a bit of protein shake. Sometimes, he couldn’t gather the stamina to make it to school. My husband and I worried. The school pressured. The bills mounted.
We prayed. Friends prayed. Strangers prayed. But there were no answers.
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6 (NIV).
Embracing the peace of Christ in the midst of uncertainty challenged me.
Finally, after many tests and procedures, a diagnosis was reached. Whew! Finally a name and a course of treatment. Finally, an answer! Medicine would bring healing and resolve the problem. I grabbed hold of the answer and felt a sense of relief; control; no uncertainty. How easy is it to acknowledge the “peace that passes all understanding” when circumstances line up according to our expectations?
But would that peace permeate if the circumstances change? The events of the next day confronted me with that question.
Following dinner, upon preparing to study for finals, he fell to the couch and began to seize. Never having witnessed a seizure, it was the most terrifying moment of my life. The limp look of his body; the lifeless look in his eyes, will remain etched in my mind for a long time. Those five minutes led me to a profound realization as my mind grasped to acknowledge the surreal reality spinning around me: there are many things I can control-but death may not be one of them.
Fortunately, he came out of the seizure, was quickly rushed to the hospital, and the scans came out clear. But, more questions arose...and yet no answers. In my frustration, I hesitated to let go of what I thought to be a resolution. I didn’t want to believe that our lives were once more catapulted into the abyss. “How do you embrace the peace that transcends all understanding when God’s movement does not align with Earthly expectation?
As we dealt with the uncertainty in his health, we attempted to proceed with the rhythms of life. That wrenching moment rewound in my mind in the midst of my days. Ambulance sounds caused shivers down my back. Yet, I attempted to let Jesus, not me, guard my heart.
The dark, frigid winter painted an appropriate backdrop to the events and feelings over those next several months. While we continued to hold on to the glimmer of light held out for us through scriptural promises, the realities of living in the “not yet” continued to speak into our lives. How does one live in the truth of new life in the resurrection, yet, face the reality of destruction and death of the things of this world?
My heart and my mind bear the scars of living in a kingdom that is both now and not yet. But I am keenly aware that I am not the only one. In one way or another, all of us feel that paradox. Circumstances may differ. Our expectations and God’s answers may or may not merge. Yet, the testimony and scars of others bear witness to the peace that Christ offers, while living in a kingdom that unfolds toward completion.
It’s the peace that Jesus promised to his disciples, who had given up everything for him. “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” John 16:33 (NLV).
Eventually, the winter season yielded to the brighter, warmer days of spring; not just meteorologically, but symbolically as well. My son’s health improved. I am aware that I am bound to encounter those seasons of restlessness again. They too are promises of Jesus. But He also imparts a peace that “transcends all understanding” as we navigate through them.
It happens every year around July 5th…..As we walk into a store, the former 4th of July/Seasonal section transforms in the blink of an eye to shelves filled with notebooks, markers, crayons. Fall beckons even though the temperature bathes us in swelting heat. And the dread begins. School will begin soon.
For some parents, the reminder of the school season brings relief. Structure helps us all. For kids, boredom has set in and the opportunity for new friendships, learning environments and knowledge provides comfort. The issues of safety, school provided meals and childcare make the school year welcoming. Furthermore, I think we can all attest that, by August 1, the sibling fighting season is coming to a “point of no return.” The lure of soon-to-be peaceful hours on the homefront presents itself. I laughed when I saw that Trader Joes hosted a “back to school” tasting party for the parents on the first day of school. I’d love to say that I felt such a sense of exhilaration but I didn’t.
For me, the sight of school supplies on July 5th, brought very mixed emotions. My daughter struggled in school. While kids excitedly found out the names of their teachers we felt a lump in our throats. Would he/she see the beauty in my child that I see? While other kids frantically called up their friends to see who else shared their teacher assignment, the school suggested placing a familiar student in her class so that she would perhaps engage socially.
For us, it meant hoping that her teacher(s) would cooperate with the IEP easily so that I didn’t have to spend time at night emailing them about assignments. My other kids tired of being pushed aside in order to help my daughter complete her homework. We’re talking long tension filled hours which resulted in exhaustion for my daughter as well as my husband and me. Those days seemed to resemble a scene from the movie, “Groundhog Day.” I actually loathed going to sleep as I knew that the events of the day would all play out again the next day.
Getting my daughter to school proved to have its own challenges.
How do you manage to get a child to school on time when the clutches of anxiety/depression attempt to pull your child away from your hands ?
How do you move on with your day after dropping your child off at school after an hour long battle? Her eyes, swollen and puffy, her demeanor signifying defeat?
Don’t get me wrong. Summer is not always a picnic either when you have a child with behavioral/mood disorders. The lack of structure, the full on presence of everyone at home, everyday, and the lack of respite for the parents (and siblings) from the unpredictable outbursts make Summer days tedious at times. Yet, the beauty is that the child is in a familiar environment, and we can shape the schedule and activities around her needs.
These last few years, the approach of “back to school” season has not brought on the dread as much as in the past. A few years ago, we made the decision to home school our daughter. It was the best decision for our family. This choice presents its own set of challenges but we have developed a routine that works for us. I realize that homeschooling may not be the best solution for everyone.
So for those of you who are familiar with the dread of which I speak, keep on keeping on. God knows how much you love your child and that you want the best for them. What can you do?
Ask for help. You are not a bad parent because you cannot manage this school thing alone. Utilize your school village: social workers, resource teachers, aids to help your child navigate the learning environment. Furthermore, know your child’s legal rights for education. If necessary, seek advocacy outside of the district. There are some lawyers who offer services pro bono (search for local resources).
Let your vulnerability speak of your journey. I remember one phone call with my daughter’s resource teacher in which the tears came so quickly and so fiercely, that I could barely speak. Sometimes, others really do not understand the depth of the frustration and pain you feel for your child.
Most of all, know that God has created your child for a purpose. A sacred purpose. No one can take that away.
What can you do If you are reading this post and do not face the dread posed by “Back to School” season? Consider the little things that can make an impact on our families in a big way. Providing meals (even a gift card), extra affirmation to the siblings and generally listening without judgement speaks love into their souls. Pray for them.
These days can be hard. Sometimes, the words to form our prayers are just not there. But remember this: “Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. “(Romans 8:26, Msg.)
I am not pregnant! Let’s get that out of the way first. Having a child at 51 years old is not on my bucket list.
The title of my post comes from my mantra, “That (insert any unexpected child rearing moment of perplexity) wasn’t in the book!” The book of course is the popular, What to Expect When You’re Expecting. Like many would- be parents, I bought the book. I even remember the moment. In April 1997, having just had my first pregnancy confirmed by the Dr., I excitedly ran to the big box bookstore nearby and purchased my copy. It was a pinnacle moment as I felt I had entered a long sought after season of life.
During the next nine months, the book became a constant companion of advice and knowledge concerning my changing body and, well, what to expect. Admittedly, there were parts of the book that touched on areas of pregnancy that no one wants to really encounter: the signs of a failing pregnancy/fetal distress. But, I didn’t focus on those parts because that vision didn’t fit with my expectations and the visuals portrayed in T.V shows and photographs. For me, I held a picture of giving birth to this God created human being on whom my husband and I would love. The three of us would adapt to life together. Giggles, snuggles, walks, celebrations of milestones would mark our new journey.
The picture I held of our life together remained similar to the information in the book. The sleepless nights were hard (I shudder to think how I functioned at work on a few hours of sleep), the feeding schedule (every two hours for six months), and the pumping were an awakening for me.
However, throughout the years, more and more situations surfaced that result in my re-evaluating just what was it that I was expecting?
Sickness (requiring a trip to the E.R or 24 hour drugstore for medicine)? Sibling arguments (that make the WWE look lame)? Didn’t see that coming. Pulling a cap covering the toilet screw from my 2 year old daughter’s mouth while getting ready to go to church and preach? Writing a sermon in bytes while alternately cleaning up after my son who had a stomach bug? The harsh reality that it is not uncommon to lose a pregnancy (I had two ectopics)?
Fast forward to the recent moments: realizing I ran out of bread in the morning and choosing between running to the store or counting change for hot lunch, getting a child who isn’t a morning person out the door without missing the bus, the diagnosis of disorders/medical maladies that I never knew existed, some I wish didn’t (mood disorders, epilepsy), some you would never believe either). What about the run of the mill fever, stomach bug or sore throat-those were NOT IN THE BOOK!
The realization, of course, is that if parents were given a complete vision of the future, a drastically reduced population would probably result. Truthfully, the response would be, “there’s no way I can do this!”
But, that is exactly what God, the Creator of our children, wants. For our sake and that of our children, the call to parenthood begins with a glimpse of what we can expect. Parenting involves humility; realizing that we don’t know all the answers. We need discernment, strength, and wisdom from the One who Created them (and us). We function as God’s image bearers and vessels as we walk alongside our brothers and sisters-sometimes staggering. laughing, crying, conversation, praying, supporting, advocating…..
In the midst, we experience God in a way that we never “expected”-it’s beyond our expectations.
God has always called His people to tasks that seemed overwhelming-Moses, Noah, Abraham, Mary, Joseph-just to name a few. Yet, they obeyed (some reluctantly) with just a little information given to them. They had no idea what was in store but trusted in the God that called them.
I will continue my mantra, “THAT WASN’T IN THE BOOK,” as it reminds me, often humorously, that I’m not in this parenting thing alone. Come to think of it, that goes for life in general.
I wonder what surprise awaits me tomorrow?