Friday Remix: Helping Kids Deal with Death

This Friday we have repost from BackupCare.org about how to help children deal with death. This is a tough subject to write about but also an important discussion.

Thank you to Kevin for sending us the link.

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Originally published at http://www.backupcare.org/blog/helping-your-kids-deal-with-the-death-of-a-family-member/.

Helping Your Kids Deal With the Death of a Family Member

Losing a family member is hard at any age; however, children often lack the life experience that adults rely on for developing the coping skills to get them through this difficult time. When a child loses a loved one, he can experience a variety of emotions that may range from confusion to anger. Children who lose a loved one after a prolonged illness may even feel guilty about having a sense of relief. Throughout the grieving process, children will frequently turn to the adults around them to seek answers regarding how to cope with losing their loved one. Whether you are a parent, teacher or caregiver, here is what you need to know about helping kids deal with the death of a family member.

Have an Honest Discussion

Breaking the news of a loss to a child is one of the most challenging conversations that parents can have. However, this initial conversation is what will pave the way for a child’s reaction. To initiate the discussion regarding a loss, plan for a time when you can sit down and talk to your child uninterrupted. Allow your child to react however he may need to without expressing judgment. After hearing about the death of a loved one, children may react with anger, fear or confusion. Very young children may even deny that the death has occurred. Finish up your first discussion by letting your child know that you are available to answer any questions that may arise later or just to offer a hug.

Use Concrete Language

During every discussion with your child, it is important to avoid using one of the many euphemisms people have for death (e.g., “passed away”). This is especially true for young children, who may take it literally if you say that their loved one is “resting.” If your child has questions about how the death occurred, be honest, but be sure to use language that is geared toward your child’s age and development.

Recognize the Signs of Grief

Understanding the different signs of grief will enable you to help your child through the grieving process. It is important to note that children will react differently depending upon their age and stage of development. For example, older children may feel guilty that they did not do something to prevent the death. This can occur even when there was nothing they could do to help their loved one. According to Mental Health America, young children may also revert to outgrown behaviors, such as sucking their thumb or wetting the bed. While many of these reactions are normal, it is important to keep a watchful eye for signs that grieving is becoming severe.

Coping With Prolonged Grief

Because of the wide range of emotions children can experience during the grieving process, it can be hard to know if a child is experiencing deeper trauma. However, Dr. Bruce Perry offers a few things parents should look for regarding severe grief reactions. For example, Perry explains that severe grief reactions may be unnaturally prolonged if they are still occurring six months after the death. Although children may still feel occasional bouts of sadness, they should be on their way to handling their emotions in a positive manner at this point. Any child who has grief symptoms that are prolonged or that interfere with his daily functioning may benefit from talking to a professional mental health counselor who is experienced in working with grieving children.

Be Available for Questions

As a child begins to accept the loss, she may still come to you with frequent questions. If you are also experiencing profound feelings of grief, it may be hard to talk about the loss, but your child depends upon you for support. Therefore, try not to avoid bringing up the death, and encourage your child to talk about it any time she feels sad. If you recognize feelings of guilt in your child, it is important to reinforce the concept that death cannot be prevented and that moving on with life does not mean that the loved one’s death did not matter. Death can be scary for children, so don’t shy them away from asking questions or expressing their fears. Help them see that death, while sad, is a part of life.

Surround Your Child with Support

When a child is learning how to deal with the death of a family member, he can benefit from having many different resources for finding ways to cope with grief. Let your child know that other family members are available to help him through this time. School counselors, teachers and other familiar adults will also be willing to provide support to your child once they are aware of the family member’s death. There are also support groups available where your child can meet other children who are also struggling with the loss of a loved one.

Helping your kids deal with the death of a family member begins the moment you have the initial conversation. By talking to your child openly and honestly, you will be paving the way toward better coping skills that will help your child throughout the grieving process. As your child begins to accept the loss, be sure to set up a memorial ritual that you can use to remember your loved one while providing your child with a healthy outlet for his grief. The goal isn’t to extinguish those feelings of sadness, but to help your child learn to understand them and incorporate them into a healthy view of life.

The Day I Thought I was Dying!

I am not going to lie to you, readers, I had hoped to one day craft this story into something like James Thurber’s classic “The Night the Bed Fell,” but I realize I am not that witty of a writer blogger. Nonetheless, this story – which does not make a better recitation – could be beneficial to anyone with a craniofacial condition, so I’ll share it now. A tale of warning perhaps, so you don’t violently reach out and grab the arm of your unassuming airplane neighbor should you experience the phenomenon known as aerosinusitis. Seriously, y’all, they have air marshals these days!

Several years ago, I was traveling alone for a business trip. I am quite antisocial on airplanes, so this trip was going just my way. I had a snoozing seatmate and lucked out with the bulkhead seat, feeling almost as important as those first classers behind their little blue curtain.

The plane ride was smooth and uneventful and quite before I realized it, the pilot announced our descent. Dutifully, I turned off my phone (confession: I just put that baby on airplane mode) and sat back in my seat, happy to be at my destination. Just then, out of nowhere, the most blinding pain I have ever experienced ripped through my forehead right above my right eye. All joking aside, it hurt like no pain I had ever known. My eyes slammed shut and began pouring water through my clenched lids. The pain was so great that I was instantly nauseous and broke out in a cold sweat. “It’s an aneurysm!” I panicked (my family may or may not have an irrational fear of succumbing to aneurysms). I grabbed my armrest and thought about pressing the glowing attendant button. Then I thought about screaming, but in all earnestness, I couldn’t even move I was in so much pain. After about 90 seconds of feeling this excruciating pain, I doubled over and pressed on my forehead with trembling hands. My life didn’t flash before my eyes, but I did go through a mental catalog of what dying on a plane would mean. It would certainly make the news... not how I wanted to go out!

I pressed harder on my forehead, feeling some release and a few seconds later by forehead made a noise. I know, you’re thinking, “What the heck is going on here?!” A sound much like a valve releasing pressure went, “Eeeeeeeek!” and the pain went from off the charts to about a 9 (on that 1 to 10 scale they use in the ER). Since a few minutes had passed and I heard squeaking going on, I decided this was no aneurysm and I would live. However, death now seemed like sweet relief because I was still in agony. My contortions in my seat had managed to rouse my neighbor who looked over and said in alarm, “Are you okay?”I managed to nod, with my eyes still closed, and said, “I think it’s a migraine.” He asked if I needed the flight attendant but I waved my hand and said, “No, no... I don’t think so.” I can tell you, I wasn’t sure I didn’t need help, but I had no idea what a flight attendant could do about the mystery pain in my head mid-descent. 

Slowly, the pain decreased again with constant pressure on my forehead. I was able to open my eyes and release my jaw. My neighbor looked over at me with concern (the black mascara streaks on my face surely didn’t help) and I managed a weak, “It’s easing up, thanks.” By the time we landed, the pain was now only a dull headache. The nausea had subsided and the adrenaline had worn off. (It is quite a rush to be convinced – even for 90 seconds – that you’re dying.) I let nearly everyone else deplane before I stood up, a bit woozy, and waddled off the plane. I had no idea what had happened and for the rest of the day, I felt a bit hung over, but otherwise fine. 

I now know what I experienced is called Aerosinusitis or Barotrauma. You can Google it and find lots of different definitions and levels of explanations, but Wikipedia breaks it down quite simply: “Aerosinusitis is a painful inflammation and sometimes bleeding of the membrane of the paranasal sinus cavities, normally the frontal sinus. It is caused by a difference in air pressures inside and outside the cavities.”

High altitude fliers and scuba divers most often experience this condition, but if you have sinus issues like I do, regular commercial flights can cause it. The reason it happens is because (again from Wikipedia)

On ascent, the air in the paranasal sinuses will expand according to Boyle's law, contracting during descent. Normally, the sinuses drain into the nasal cavity through small ostia, which permit mucocilliary clearance and ventilation that equilibrates pressure. However, when the opening is obstructed due to inflammation, polyps, mucosal thickening, anatomical abnormalities, or other lesions, pressure equilibration is impossible. Squeeze is produced on descent when trapped air in the sinuses contracts and produces negative pressure. The pressure differentials are directed to the center of the sinuses producing mucosal edema, transudation, and mucosal-or submucosal-hematoma, leading to further occlusion of the sinus ostium. The sinus will fill with fluid or blood unless the pressure differential is neutralized.

With me, I have numerous sinus polyps and as my ENT says my sinus cavities are “just abysmal” and “chock full of junk.” Lovely, I know. Simply, that means I don’t have adequate drainage passages to allow the pressure to equalize on its own, so I experience aerosinusitis. Fortunately, I do not experience this ice pick to my skull every time I fly, but it does happen about 25% of the time. For example, on my last vacation, I had a total of four flights and only experienced an episode on the first flight. Weird, I know. But like Auggie in Wonder, I definitely have some medical mysteries about me. 

I plan on consulting with my ENT in the future to determine how he thinks I should handle my sinuses, but so far, the best advice I have found is to take a decongestant before the flight so that my sinuses are as clear and minimally inflamed as possible. When I feel the first sign of the attack coming on, I just get comfortable and prepare to ride it out. The first sign, by the way, is often pain above my teeth on the right side of my mouth and the slightest mounting of pressure over my eyes. Then the ice pick.

Out of all the medical traumas out there, I am relieved that aerosinusitis is in the end, just an inconvenience. A painful one, but short lived and easily avoided. Amtrak anyone?

*Please note that this blog is not intended to diagnose or treat any medical conditions. Should you experience aerosinusitis or any other medical condition, please contact your physician immediately.

Erica

The Things We Take for Granted

Those of us who were born with all of our senses in tact think nothing of how they enable us to explore and engage in the world around us.  Like most things, we simply take them for granted.  Take away even one portion of those amazing gifts, and I’m pretty sure it would consume most of us with concern and even fear.  Because Peter has had unilateral hearing his entire life, he knows nothing different.  He has never heard in “stereo”, and he has never been able to localize sound.  Since he was five, Peter has worn a prosthetic ear that is very realistic.  Consequently, people (including myself sometimes) often forget that he is completely deaf on his left side.  Sit on his left side in a crowded restaurant, however, and you will quickly realize how difficult it is for him to communicate in a noisy environment.

Peter had ear tubes placed many times when he was a baby/toddler, and he has fortunately been able to avoid chronic ear infections.  There is only one previous time I remember him having an ear infection that concerned us to the point of taking him to the ER on a Sunday.  It really is frightening how much his hearing deteriorates with an infection, and, like I said, I’m thankful this has been a rare occurrence. 

Last Friday night while I was packing to return home from vacation, Peter awoke in extreme distress.  He couldn’t hear very well out of his “good” ear and was hysterical with fear that he was going deaf.  The terror on his face was heart breaking!  Once I was able to get him calmed down, I suggested that maybe he had some water in his ear from splashing in the pool or taking a shower before bed.  He was not experiencing any pain from the ear, but I could tell he was terrified about waking up unable to hear.  

The next morning his hearing seemed about the same, and he appeared much calmer.  Peter used his headphones all day in the car, and I assumed he was hearing well enough to enjoy the videos.  He was not outwardly distressed, but I now understand that he was in a constant state of worry.  By late afternoon, he did break down in the car and starting crying about his fear of going deaf.  We were not due to get home until later that evening, but I really wanted to ease his anxiety in any way that I could.  The thought of waiting to see his pediatrician on Monday didn't seem like a good option.  So after spending 14 hours in the car, Peter and I arrived home only to switch vehicles and head to the closest urgent care clinic.  

Turns out that Peter did have a slight ear infection as well as some wax buildup.  I felt such a huge sense of relief after taking him to the clinic.  I could clearly see the stress draining from his face once the doctor told him that his hearing was going to be fine.

Witnessing the terror Peter felt over the prospect of going deaf made me think about how much stress he must always be feeling.  I often use humor to help Peter cope in social situations, but the reality is that he thinks about his differences and how they impact his quality of life much more than I ever realized.  In addition to his hearing loss Peter was trached and tube-fed for many years which also interrupted his senses of taste and smell.  His constant need for medical interventions from birth further impacted his sense of touch (sensory system).  I can’t even grasp the thought of overcoming such sensory dysfunction, and yet I have watched Peter spend countless hours in therapy working through such difficulties.  I don’t believe therapy will ever replace what Peter has never had nor will it erase what was taken away due to his repeated trauma in early life.  As his parent, I do feel a responsibility to acknowledge how hard he works to accomplish tasks that are more easily achieved by his peers. 

Typical of Peter, he doesn’t hesitate to remind any of us about his disabilities, especially if there is potential humor involved.  Last week while on vacation, Peter says to his younger brother, “How come I hear better with one ear than you do with two?!”  And, when asked by the urgent care doctor if his hearing in one or both ears was bad, Peter responded in all seriousness, “Well, I only have the one.”  He then looked at me with that mischievous smile I will never tire of seeing.  That’s my Pete-E-Pie!

Fears & Phobias from Medical Treatments

As part of his Goldenhar Syndrome, Peter was born with a single- pelvic kidney. He has also had high blood pressure since he was minutes old. The most unfortunate part for Peter is the regular need to test his kidney function via blood draws. When he was a baby his electrolytes were all over the map, and we would sometimes have to draw labs more than once a week.

Given the situation, you would think that Peter’s veins would at least be easily accessible. But, no, his veins are so uncooperative that he has been sedated just to insert an IV for antibiotics. A pediatric angio specialist nearly gave up placing a PICC line after numerous attempts while he was under sedation, and it took over a week for neonatal nurses to secure a PICC line after his birth. The poor thing has been poked with needles all over the place. He’s even had an IV line placed in his head a few times. As a baby, Peter’s labs were drawn by tightly wrapping him up in blankets, strapping him to a board, laying him down under bright lights, and then sticking him numerous times with a needle.

In Peter’s early years, the one thing that reassured me was that he would, hopefully, have no memory of those horrific treatment rooms. As he got older and more aware, however, Peter’s fear of needles intensified. When bringing Peter in for labs, I was frustrated with techs who would insist that “they work with children all day long and are very good at their job”. In other words, “Mom, we got this. You are being a little overprotective and just need to let us handle this.” Eventually, I found the best way to avoid the torturous experience was to have Peter’s doctors order labs whenever he needed to be sedated. This happened frequently enough when he was 2-4 years old that we almost never had to draw labs while Peter was awake.

As Peter has grown and become stronger, it is nearly impossible to hold him down for anything he is unwilling to do. To help him work through his fear, I’ve tried everything from deep breathing techniques to sessions with a psychiatrist. I’ve also become more vocal with lab techs, making sure they really do understand what an extreme phobia he has and that he truly does have difficult veins. Peter, of course, does the best job of getting everyone’s attention since he is always in hysterics. This was the case on Thursday when it was necessary to draw labs as part of his nephrology clinic.

Knowing in advance that this was a strong probability, I contacted Child Life to see if someone could meet us at Peter’s appointment. In my experience, Child Life is the absolute best help you can request for your child. They work with Peter to address his fears through medical play, and they empower him with age appropriate education about his medical condition. For me as a parent, Child Life validates that I haven’t completely misjudged his level of anxiety. Their expert assistance also helps when I am upset and anxious before a procedure. I only wish we had asked for their help years ago instead of more recently.

In watching Peter at the clinic this week, I understand now more than ever how deep his fear is. It saddens me to realize how much he actually does remember of those early days, perhaps even as far back as his lengthy stay in NICU. I have come to believe that the body, in certain instances, holds deeper memories than the mind. While the mind can choose to forget, the body may still hold onto a painful experience. There is no question that our craniofacial children experience trauma as a result of managing their birth defects, often from a lifetime of surgeries and painful procedures. While we continue to manage our children’s medical care, however, we must remember and respect what they have endured.