Caring for the Caregiver Jonathan McGuire Caring for the Caregiver Jonathan McGuire

"CAN YOU HEAR ME NOW?"

“Can you hear me now?” In one simple phrase, Verizon highlighted and brought humor to a common frustration that befell many cell phone users. 

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“Can you hear me now?” In one simple phrase, Verizon highlighted and brought humor to a common frustration that befell many cell phone users.  We’ve all been there…talking away and eventually finding the line to be dead when we pause.  This leaves us wondering how long we have been talking to ourselves and at what point to resume the conversation when we finally reconnect. Or perhaps you have been in the position of trying to obtain some urgent piece of information like directions and the line is so garbled you can’t understand where to go next.  In one simple phrase, Verizon brought light to our desire to communicate and to be heard.

We all have a desire to be heard and this is an extremely meaningful way to come alongside families who have been impacted by special needs. 

In the three years that things were at their worst with our family, we only had one couple brave enough to invite us to sit down with them and share our journey and boy did we share our story.  We sat there over coffee, they listened, cried with us and didn’t offer a solution or other quick fix.  Now to be fair, we are fairly quiet and many people didn’t realize how bad it was.  However, that night was so refreshing and in so many ways it was healing just to be heard.  Did anything change in our situation?  No. But, we felt cared for, our pain was validated and we felt loved.

Listening is like any skill.  It takes practice.  Here are some tips to improve your listening skills to help those you are coming alongside feel heard.

·      Set aside time.  If you know someone is struggling, don’t give them five minutes in passing to share their heart. It will likely take a while for them to really be real with you.

·      Make eye contact.  Set down the cell phone.  Don’t take calls, check Facebook, reply to texts and don’t frequently check the time.

·      Be present…  Focus on what they are saying and not how you are going to respond.  Periodically repeat back to them in your words what you heard them say.

·      Acknowledge how they felt.  “Wow, that must have been…”  Don’t minimize the situation, over spiritualize, or offer some cliché response.  For example, “God doesn’t give us more than we can handle” is NOT helpful (or Biblical).

·      Love them.  When you leave your time together, they should feel loved and not judged.  They may be believing things that are not true.  As you develop your relationship with them, there may be a time to address that with them but that time is usually not when they are first sharing their story with you.

·      Finally, don’t avoid them afterwards or leave them wondering if they overshared.

So, “Can you hear me now?” 

What of the above tips can you implement to strengthen your listening skills?  Is there a family impacted by special needs that would be encouraged by having you intentionally sit down with them to hear their story?

“I called on the Lord in my distress, and I cried to my God for help.  From His temple He heard my voice, and my cry to Him reached His ears.” ~ Psalms 18:6 (HCSB)

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Jonathan McGuire Jonathan McGuire

JESUS WITH SKIN ON

It can be difficult to know how to come alongside someone who is struggling, especially when you know there isn’t an immediate way to bring long term relief.

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Have you ever felt so emotionally and physically exhausted, that it was all you could do to just keep going?  Ten years ago, we moved to Fort Worth, TX in pursuit of a calling that God had laid on our hearts.  We were going to help bring his word, the Bible, to millions of people who had never seen it or heard it in their own language.  At the same time, our youngest son was born…allergic to all food, flat affect, unresponsive to the stimulus around him.  Sarah was only getting 2-3 hours of sleep per day if you put all the 15 minute increments together.   It felt like God had given us a great “calling” but then abandoned us.  One day, Sarah was asked by an individual how they could help…her reply, “She needed Jesus with skin on.”  Someone who could just come alongside our family, be there for us with simple daily tasks, clean the house, do laundry, make dinner, hold our screaming son, and let her actually get a break or sleep for more than a 15 minute stretch.  You don’t have to be in ministry for this to be your experience with special needs.  Many parents, whose children are impacted by special needs feel exhausted, alone, and even abandoned by God.  Without knowing it, they long for “Jesus with skin on.”

It can be difficult to know how to come alongside someone who is struggling, especially when you know there isn’t an immediate way to bring long term relief.  The chances are, that if you are reading this article, you personally know someone whose family has been impacted by special needs.  Here are some ways that you can be “Jesus with skin on” to that family:

  • Pray for them (Let them know you are praying and ask specific things you can pray for that week or month).
  • Ask how they are doing, and really listen. (You will likely hear the same struggles over and over…don’t judge.)
  • Find tangible ways to serve them. (Babysit, get groceries, plant flowers and maintain the flower bed… Find ways that would be a blessing to them.)
  • Send an encouraging note.
  • Invite them to share their journey in special needs with you.  Allow them to share their fears and anger without judgment.  Avoid the desire to try to offer a “quick fix” or solution.
  • Allow them to express and explore spiritual struggles they are having… Warning, this may stretch your own spiritual comfort zone.
  • Avoid minimizing their situation.
  • Instill hope without offering false promises.
  • Be there for the long haul.  It will be a difficult friendship and will likely take more work to make it happen on your part.  Often you will be unable to relate to the depth of their struggles and if you aren’t intentional, it could be easy to drift away.

Who do you know, whose family has been impacted by special needs?  What can you do to be “Jesus with skin on” to that family?  If you are the parent of child impacted by special needs, what are some ways people have come alongside you that have been helpful or encouraging?

“By this everyone will know that you are my disciples, if you love one another.”

~ John 13:35 (NIV)

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Jonathan McGuire Jonathan McGuire

HOW ARE YOU....REALLY?

As parents, whose children are impacted by special needs, our natural tendency is to focus on the needs of our child over our own.

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“How are you?”  Such seemingly simple words that are often used in passing. Acceptable social responses range from fine, good, or great.  Sometimes if someone wants to be slightly more real they will say “tired” followed by a quick laugh.  Have you ever met someone that you felt you could be real enough with to give an answer beyond the standard “good”? 

This happened one Sunday morning to my wife, Sarah.  We were in the church service of all places and during the meet and greet time, the pastor asked her how she was doing.  Little did he know how loaded the question was.  As she replied, and he inquired more, she could no longer hold down the emotion that she was feeling and she started crying (not normal for her).  She cried all the way through the service and all the way home, where she slept for the next two and half days.  She was spent…there was no more strength to keep going.

As parents, whose children are impacted by special needs, our natural tendency is to focus on the needs of our child over our own.  We neglect our health (physical, emotional and spiritual), our marriages and other relationships because we are so driven to care for our child(ren). 

When flying, before you take off the flight attendant always walks through what to do in case of an emergency.  Through that process, they explain the importance of first placing the oxygen masks over your own mouth and nose before taking care of your children.  The airline has realized that if we don’t take care of ourselves, then we won’t be able take care of our children’s needs very long.  They have also realized that our natural tendency, as parents, is to take care of our children first.

Christ set an example for us in how he cared for himself. When we look back at his time on earth, we can see him taking time to get away to pray, setting boundaries, seeking companionship from those who were close to him during difficult times and resting.

Below is a list of ways that you can take care of yourself.  Pick two or three that you can realistically do, even if for just 5 minutes.  You aren’t being selfish.  You are doing what you need to take care of yourself and your family.


• Relax and rest

• Eat nutritiously (Avoid sugar)

• Exercise/Go for a walk

• Get enough sleep

• Talk about what happened (to God and others)

• Write about what happened (journaling, letters, e-mails)

• Laugh when you can

• Set small goals

• Keep some sort of routine

• Spend time with those who are supportive   and helpful

• Cry if you can

• Pray

• Reflect on the Word

• Sing or listen to music

• Know that the intensity of the pain will not continue forever

• Anticipate difficult times to come

• Ask for help and let others help you


What two or three of the above things can you do or are there other things you can do?  How you implement them in your life may look different day to day depending on your situation but put that oxygen mask on. 

So...How are you really?  We want to hear from you! Please comment below what you plan to do or if there is something you are already doing that helps renew you.  Let us know what is working for you.

 

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Jonathan McGuire Jonathan McGuire

Signs You May Be Dealing With Trauma

Each day, parents of children impacted by special needs experience so much just through the course of taking care of their children.  Yes, there is a lot of good but there is a lot that is really, really hard.

Being traumatized is our reaction to an event or series of events.  People will react to the same experiences differently.  I had the opportunity to debrief an individual after she arrived back in the United States from traveling overseas.  During her travels, she and two other individuals went to a coffee shop.  A truck crashed through where they were sitting and gunshots erupted.  She ran to safety with the others.  In checking to make sure they were each okay, one individual found a bullet hole in his pant leg!  While we were debriefing, it was clear that the woman was struggling greatly from the emotional trauma.  In fact, through conversations it was evident that she was more deeply impacted than the individual who had the bullet go through his pant leg.  This does not mean she was weaker than him or processing the event wrong.  We just all respond to situations differently depending on timing and other things going on in our lives.

Each day, parents of children impacted by special needs experience so much just through the course of taking care of their children.  Yes, there is a lot of good but there is a lot that is really, really hard.  We are there with our children as they struggle.  We are with them through the countless doctor appointments and possible surgeries.  We are with them through the sleepless nights and are agonizing about what to do next.  It tears us a part to see them hurting and not know what to do.  As my wife Sarah tells people, it wasn’t that she was just trying to get through the day.  She was trying to get through that minute.  Is it any wonder that we as parents can experience trauma or secondary trauma?

How about you?  How are you coping?  Mobile Member Care works specifically with missionaries overseas and has put together the following chart for reactions to trauma in adults.  You can see the original here.  As you read the chart, mark those reactions that apply to you. 

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How many of the above reactions sound familiar to you? One, five, ten…more? 

If you find yourself struggling, remember…it doesn’t mean you are weak or lacking faith.  It doesn’t mean you are a bad parent. It is okay to struggle.  When we accept our weakness, it opens the door for God's strength to work through us in ways we never imagined.   

2 Corinthians 12: 9 "My grace is sufficient for you, for my power is made perfect in weakness."

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Jonathan McGuire Jonathan McGuire

Who Me...Traumatized?

It is easy to ignore how we are feeling and to bury the emotions.  Depending on how severe the needs of the child may be, we may just be in survival mode.  

What do you think of when you think about trauma or being traumatized? When I think of being traumatized, I often think of people who have been in severe accidents, victims in a war, soldiers who have seen their buddies die in combat, survivors of sexual abuse, victims of rape and people that have been through other unimaginable atrocities.  But what about the parents of children impacted by special needs?

One of the better definitions that I have seen regarding psychological trauma comes from the book Trauma & Resilience by Eds. Frauke C. Schaefer, MD and Charles A. Schaefer PHD.  That definition reads:

Trauma is any serious event that threatens or affects the life or physical integrity of a person, or a loved one.

Let’s pause and think about this for a moment.  For some of you, when you read the above it will be like looking in a mirror. For others, it may be more like getting a glimpse of a distant acquaintance that you try to avoid – you recognize it but don’t think it applies to you…if that’s you, keep reading. 

Our initial serious event was finding out that our son could only eat sweet potato without projectile vomiting, rolling up in a ball of pain and having doctors tell us that they would make a note in his chart as he was failing to thrive with a body weight under the 5th percentile for his age.  What serious event or series of events are you working through?  Perhaps you lay awake at night listening to make sure you child is still breathing, perhaps you don’t know if your child will ever walk or you know she won’t…what are you coping with?

It is easy to ignore how we are feeling and to bury the emotions.  Depending on how severe the needs of the child may be, we may just be in survival mode.  We are so focused on the child that we neglect ourselves.  Have you ever tried to hold a beach ball under water?  What happens?  Like a beach ball, those things we have been burying will burst to the surface and we will see them impacting us emotionally, physically, and spiritually. 

I didn’t realize how much our experience had impacted me, until I started sharing our story more.  The very first time I shared about our journey, was in front of a large group of people. I suddenly found myself choking back the tears.…Nothing like being real and vulnerable while you are public speaking.  This continued to be a trend in the future as I shared about our journey. I would enter into our story and then find myself wanting to disengage so I wouldn’t have to deal with the rawness of the emotion but with every telling it slowly became easier.  Not because I was disengaging but because I was healing from a wound I never knew I had.

What significant event is impacting your life and family right now?  What in your life indicates that it may be impacting you personally on a physical, emotional or spiritual level?  We would love to hear from you! Please comment below.

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Jonathan McGuire Jonathan McGuire

Trauma and Special Needs?

In the late fall of 2012, instead of driving to Michigan for Christmas with my wife’s family, I found myself in a small plane landing at a refugee camp on the border of Sudan and South Sudan.  Instead of subdivisions and snow, I was landing in a country of extremes… 

In the late fall of 2012, instead of driving to Michigan for Christmas with my wife’s family, I found myself in a small plane landing at a refugee camp on the border of Sudan and South Sudan.  Instead of subdivisions and snow, I was landing in a country of extremes… 

Thousands of people were fleeing to this camp as their own government was bombing their homes and soldiers were killing their families.  It was a place where it was uncommon to see a grandmother or grandfather because the youth were sent in their stead so there would be hope for future generations.

It was my privilege to come alongside a group of refugees, help them begin processing their trauma and to train them on how to come alongside others.  As tanks were attacking 8 kilometers from us, we listened to their stories of survival and death.  At first, the individuals were seemingly devoid of emotions.  Not only were there no smiles, there was no grief or tears.  Remembering the different concepts we taught was difficult and some of them struggled with just staying awake.  Most of the participants believed they had been cursed by God.

And you know what?  As the father of a son with special needs, I felt like I could relate.  I could relate to just being in survival mode.  I could relate to the numbness, to questioning God and his promises.

As time progressed, the refugees were able to share their stories with each other.  They were able to grieve.  They shared their pain through art, drama and song.  They were able to gain hope through God’s word and begin the process of healing despite a life of uncertainty. 

Does any of this resonate with you?  When you brush into people and they ask how you are, do you struggle with knowing what to say?  Are you struggling with unexplained mood swings, constant exhaustion? Maybe you too are wondering if God’s promises are true?  You are not alone.

Healing will take time.  It may take years or for some even decades.  It will go in phases.  At times, you will feel on top of the world and others, you will be in survival mode.  I encourage you to find that person to talk to whether they are a friend, a counselor or a group who gets it. Find someone who you can be real with and share your struggles with even if it seems like you are struggling with the same things day after day.  I would invite you to look to God and his word.  If his promises seem hard to swallow right now, start by holding on to one simple but profound life-changing truth…He loves you.

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Jonathan McGuire Jonathan McGuire

DEAR DAD TO THE CHILD IMPACTED BY SPECIAL NEEDS

I don’t know you, but let me tell you that you are my hero. 

Dear dad to the child impacted special needs,

Many of us grew up playing with our buddies, pretending we were Superman, Batman or Spiderman… arguing about who would be which one and even philosophizing about who could beat who if they fought each other but in the end it didn’t matter because we knew we would each save the day.  When asked what we would be when we grew up, the answer was often a fireman, a policeman, or a soldier.  We would catch the bad guy. We would put out the fire.  We would save the day and we would come to the rescue.  There would be parades, ticker tape and we may even get the key to the city.

 

For most of us, we ended up going different paths but we still have that deep desire to be our family’s hero, to come to their rescue.   The majority of us would lay down our lives for our family if we had to but now we find ourselves in a situation that we can’t “fix.” 

Instead of being the super hero that saves the day, you find yourself barely making it through the day.  There is no praise.  There is no applause, no parade and no ticker tape.  Some days you feel lucky to just have the key to your home…let alone the city.  You have such a strong sense of needing to provide for your family and yet you don’t know where the money is going to come from to pay for the new specialist, the new medication, the specialized foods or therapist your child needs.  You may have even tried to pick up extra shifts or extra jobs to pay for these needs but the budget has long gone out the window.

When you were first married, you and your spouse had visions and dreams of what life would be like. Dreams that you would do together but now you feel alone.  The wife whom you used to pour your heart out to after work is coping, processing, looking for resources, and is all out focused on the needs of your child with special needs.  It has been forever since, the two of you have had time just the two of you.  You feel like you need to be the strong one and listen to her struggles during this time and are afraid to burden her with your struggles.  The needs of your child may be so great that you feel like parenting the other children is on you.

I don’t know you, but let me tell you that you are my hero.  Unlike Superman, who can fly away after a fight or Spiderman, who can sling away on his web.  You are there for the long haul.  You have defied the odds and stuck in there even with the additional stressors on your family.  You may be an accountant working in the office every day or you may work on the line in a factory somewhere but in truth, you are a soldier fighting for your family. 

TODAY I AM CELEBRATING YOU AND I HOLD YOU UP TO THE ULTIMATE FATHER … PRAYING THAT HE MEETS YOU WHERE YOU ARE AT.

From One Dad to Another,

Jonathan

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