Friday, June 28, 2013

SPECIAL NEEDS ETIQUETTE 101: "I'll Be Praying For You"

My brothers and sisters, if a person claims to have faith but does nothing, that faith is worth nothing. Faith like that cannot save anyone. Suppose a brother or sister in Christ comes to you in need of clothes or something to eat. And you say to them, “God be with you! I hope you stay warm and get plenty to eat,” but you don’t give them the things they need. If you don’t help them, your words are worthless. It is the same with faith. If it is just faith and nothing more—if it doesn’t do anything—it is dead.
 
But someone might argue, “Some people have faith, and others have good works.” My answer would be that you can’t show me your faith if you don’t do anything. But I will show you my faith by the good I do. You believe there is one God. That’s good, but even the demons believe that! And they shake with fear.

You fool! Faith that does nothing is worth nothing. Do you want me to prove this to you? Our father Abraham was made right with God by what he did. He offered his son Isaac to God on the altar. So you see that Abraham’s faith and what he did worked together. His faith was made perfect by what he did. This shows the full meaning of the Scriptures that say, “Abraham believed God, and because of this faith he was accepted as one who is right with God.”[a] Abraham was called “God’s friend.”[b] So you see that people are made right with God by what they do. They cannot be made right by faith alone.

Another example is Rahab. She was a prostitute, but she was made right with God by something she did. She helped those who were spying for God’s people. She welcomed them into her home and helped them escape by a different road.[c]

A person’s body that does not have a spirit is dead. It is the same with faith—faith that does nothing is dead!
~ James 2:14-26, ERV ~ 

Let me begin today's post by apologizing to all my well-meaning brothers and sisters in Christ whom these words are likely to offend.  God knows your heart.  Parents like me know that you are a loving person with good intentions.  We need prayer and want people praying for us.

That being said, please know that there can be nothing less deflating to a parent who has a child with difficult issues than to have the words "I'll be praying for you," thrown at you with less thought than pennies pitched into a fountain.  People usually say it with a wince on their face, desperate for something meaningful to say when they hear of your challenges.  It seems in their discomfort, people want the magic bullet that will just take away your problems.  God bless them for their empathy!

Yet, as we read in the passage from the Book of James above, actions speak louder than words.  Frankly, I can feel deeply wounded when I am subject to people's repeated promises of prayer, while no one helps me in my most desperate hours.  I need "Jesus with skin on" when my faith is being stretched to its outer limits, when I am isolated and suffering as my treasured child struggles.  The people who convey true concern are ones whose behavior matches the prayers they promise.

So, how do we prevent the promise of prayer from becoming a mere platitude?  Here are some thoughts.

 For the person promising prayer:
  1. After listening to what's going on in the life of a parent with a child who has special needs, offer to pray with that person right then and there.  This may be uncomfortable for some, but it can be the most powerful form of prayer there is because you are halting life right where it is, and going out of your way to pray with or for that person.
  2. Ask if you can contact others to pray for that parent.  A host of prayer warriors joining together for the sake of a family in need is another powerful spiritual support.  Support your church pastor by offering to go on hospital visits, if you sense you might be able.
  3. Take the time to read the fabulous resource from McLean Bible Church's Access Ministry Special Families...  A Casserole's Not Enough.  While it was designed for churches to implement support within the congregation, this booklet gives wise insights into the common experiences of family caregivers and simple things you might do to help.
  4. Carve out the time to hand write a greeting card to the parent whom you are praying for with a meaningful Scripture passage that might edify them on a tough day.  Everyone loves to receive something in the mail that isn't a bill, especially those who have a continual parade of medical bills.  Your true sincerity shows through when you take the time to remember a person in such a way.
  5. Practical help in addition to meals, like a willingness to watch the kids, help with housecleaning, assisting with the yard or garden, and giving the family gift cards for gas can also be a tremendous relief to a struggling family.
  6. If you have the connections, offer to plug the parent of a child with special needs into a terrific resource or to network with another parent with similar experience.
For the person receiving the prayer:
  1. While you may want to strangle the person offering their prayers, lift your eyes up to God and away from your problems for a moment.  See the person's heart.  Remember, you were more than likely just as clumsy at one point in your life.
  2. Don't be afraid to ask the person offering promises of prayer, "Do you have time to pray with me right now, because I could really use it?".  This might help better convey to others the magnitude of what you are going through.
  3. Study what Scripture has to say about prayer, this will bring you encouragement to tuck in your heart when those casual comments come flying at you.  Passages such as 1 Samuel 1:10-2:10, Psalm 6:9, 2 Corinthians 1:10-11, James 5:13-18, and  Revelation 8:2-4 are full of promises fulfilled through prayer.  This will help you trust in God's care when you sense that all you are receiving are hollow words from others.
  4. If you are in a position to do so, start a prayer group for those raising children with special needs.  No one understands like another person who has gone down this road themselves.  Even if it is only once a month, imagine the encouragement you would bless other parents with, knowing that their families are earnestly and fervently being prayed for!  You might even have participants in your prayer group who are willing to serve as personal "chaplains" who go to pray with parents in the hospital.  That too, would help to show hurting families that the Lord is right there with them in their suffering.  And as a bonus, it helps take your mind off of your own problems when you are praying for another.
Prayer is an essential aid to stressed and challenged families, but if you are offering it recklessly, people can immediately tell.  Offer prayer and tangible help or ongoing, time-sacrificing intercession if you truly care.  Never make this remark casually, to assuage your own emotions or to attempt a quick fix for those with challenges.

PRAY:  Lord, you tell us in your word that "the prayers of a righteous man availeth much".  Holy Spirit, by your power, assist us in living righteous lives, beyond reproach.  When we are suffering, awaken our eyes to the power of prayer.  Dispel any animosity we may feel when we sense others are merely offering platitudes.  Father, awaken the world to those who are hurting.  Motivate simple acts of lovingkindness to strengthen the weary.  Send hands that will help and arms that will comfort.  We need you, Jesus! 

~ Barb Dittrich

Wednesday, June 26, 2013

SPECIAL NEEDS ETIQUETTE 101: What're YOU Looking At?

He was despised and rejected by people,
one who experienced pain and was acquainted with illness;
people hid their faces from him;
he was despised, and we considered him insignificant.
~ Isaiah 53:3, NET ~

When I sensed God impressing upon my heart to begin writing this series, I gave a shout out to parents on our Facebook page, asking what they would like to see addressed when discussing proper etiquette with a child who has special needs.  Bar none the most emphatic response was that parents wanted me to confront the issue of staring. 

Think back to grade school for this one.  Remember when you were singled out for some reason, usually a bad one, and all eyes in the classroom were on you?  Recall the weight of your peers glaring at you as you felt their words come without speech, "You are in trouble now!".  Reach back in your memory to feel that guilt and shame of being ostracized, berated, shunned.

That laser-focused pain aptly describes how I felt when greeted by a stranger at a Memorial Day parade we attended back in 2000 with a scantily clad 1 1/2-month-old baby.  An "angry" deep purple hematoma shone on his little bicep.  "He's quite the little bruiser there, isn't he?", the stranger repeatedly commented as he allowed our newborn to grip his weathered finger.  There was an uneasy implication that we had done something to cause our son that injury.  It wrenched my gut at the time, clumsy and speechless in my first of many such experiences.

That wouldn't be the last time I felt such a stare.  When our refrigerator was delivered to our new home 12 years ago, one of the appliance store's workers caught sight of our toddling 1-year-old with nothing on but a diaper and a bruised torso looking like an over-ripe piece of fruit.  He looked at my son, looked at me, and shook his head in disgust.  I can almost feel the sickness in my stomach as I recall wanting to shout out, "But you don't understand!  He has hemophilia!  He bruises for no reason at all!"

Probably the most painful stare I experienced was when our "Houdini" daughter with her "alphabet soup" of diagnoses escaped our house in only a diaper, running through the yards as I dared to use the toilet for a moment.  Notorious for judging me a "bad parent", one neighbor called the other next door exclaiming, "Quick!  Look out your back window at who's running through your yard!"  Never once did these women ever venture to help me, help my daughter, or ask if there was something more going on with our girl.

From accusatory to curious to disdain, stares can be so immensely painful for parents like us.  They say things like, "Why don't you get that kid under control?", or "What is wrong with that kid?", or "Yuck, get me away from that weirdo!", without ever uttering one single syllable.  For mothers and fathers who deeply love their child and only want acceptance and love for that child, those stares seem like a knife to the heart.

So, how do we deal with this most uncomfortable of situations where eyes are inevitably pulled in a certain direction?

For the one who is staring:
  1. Realize how painful your unbroken gaze is.  Try to exert some self-control.
  2. If you are "giving the look" because you don't like what you see, understand that you are only 1 emergency room visit away from being the person you are staring at or their family.
  3. If you are concerned, about the one you are staring at, gently approach the family and say, "I'm sorry.  You look like you could use some help.  Is there anything I can do for you?"  If the person is rude to you in response, that's their problem, not yours.
  4. If you get caught staring at someone because you see something unusual that you can't help but look at, apologize to the person for staring and find something nice to say like, "I'm sorry, but I can't help but notice what a remarkable child you have!"  This breaks down barriers and may start a conversation.
  5. When a room is silent and an individual with special needs breaks that silence, you need not stare.  The family already knows that their loved one is creating a commotion.  Instead ask, "How can I help?", if you have the opportunity.  Otherwise, welcome the noise as part of the vibrant life in the room.
  6. Adults, learn yourselves and teach your children that it's not appropriate to say, "What's wrong with him/her?".  The person you are speaking about with a special need is perfectly made by a loving Creator.  Instead, perhaps you could all learn to courteously humble yourselves and say something like, "I'd love to learn more about your son/daughter.  Would you share his/her story with me?"  We parents of kids with unique abilities will affirm to you that our children are so much more than their diagnosis.
For the one being stared at:
  1. One situation that always makes me laugh when I remember it (although it was certainly unnerving to the family at the time), was when our friends' son with CP was at a private school picnic, and another little boy just wouldn't stop staring.  The dad, a huge ex-football player looked right at the staring kid and said, "Can I help you, Johnny?  You see something interesting, Johnny?  What do you need, Johnny?"  The poor kid finally broke his stare and shrunk away in complete intimidation.  The special needs parents were pretty upset too.  In retrospect, the dad couldn't believe he had, with all his imposing physique, asserted himself like that.  While we chuckle now, I wouldn't exactly recommend coming on that strong with others.  Rather, when dealing with curious people, if you have the strength, ask them if there are any questions you might answer for them.  A response that might work could be something like, "I can't help but notice that you are looking at my son/daughter.  He/she is a pretty remarkable person.  What can I tell you about him/her?"
  2. When my son has times where he must attend school in his wheelchair and classmates are staring, asking, "Why are you in that wheelchair?  What's wrong with you?", I have taught him to reply, "Thanks for your concern, but I really don't feel like talking about it right now," if he's not up to discussing it.  We all have times where we are tired of educating others, tired of explaining, tired of the stares.  That's okay.  But we are most effective with an ignorant world when we are courteous in our response to them.
  3. Anyone who has known me for even 5 minutes knows that humor is one of my favorite coping mechanisms.  If you just can't get past someone staring, ask them if your loved one has something stuck in their teeth, give them your best parade wave or blow a kiss at them, or do a shocked look behind you.  I known people that have had asked if something is wrong with those who are staring, only to receive the response, "Well, your daughter is handicapped."  Their humorous response was, "Really?!  Oh, my gosh!  We'd better get to a doctor!"  Sometimes, all you can do is laugh.
Ultimately, whether you are the starer or the one being stared at, remember how people gawked at Jesus.  He understands the plight of those ostracized by society.  If it was not okay for people to stare at and turn away from the Son of God, then it certainly isn't okay to treat the least of His children that way.  We must learn to treat others with the dignity that God imbued in each precious life He created.  That includes making our best, Spirit-guided efforts to have a gentle, merciful spirit with others when they just can't take their eyes off of us.

PRAY:  Lord, no matter how others may stare at us or those we love, help us to remember that we are each precious in Your sight.  You look upon us with lovingkindness, favor, and mercy.  Help us to treat one another the way we would like to be treated.  May we not pass judgment on another until we have walked a mile in their shoes.  And may we gain the wisdom to realize there is always so much more than what can be seen with the naked eye.


~ Barb Dittrich

Monday, June 24, 2013

SPECIAL NEEDS ETIQUETTE 101: Say What?

When words abound, transgression is inevitable,
but the one who restrains his words is wise.
~ Proverbs 10:19, NET ~

I was taking the sunny 2 1/2 mile walk around placid Fowler Lake on a warm May afternoon when some walkers stopped me to fawn over my infant son in the stroller.  It took only a moment for the elder of the 2 women to notice the medical alert bracelet on my baby's wrist.  "Is he allergic to penicillin or something?", the woman probed.  

Being new to the journey of parenting a child with special needs, I answered honestly, "No.  He has hemophilia."  

Her response?  "Oh, we had a dog with that once.  We had to put him down because of it."

Could there be a more outrageous, insensitive remark to make to the mother of baby newly diagnosed with a serious chronic illness?

Over the years, there has been no shortage of unsolicited advice, inappropriate remarks or just plain hurtful words.  Let me share some of the top few we've heard:
  • (In regards to our son having a genetic illness)  "Well, you knew it was a risk, and you just had to have kids anyway."
  • "Have you ever thought of getting you son a Vitamin K shot? (In regards to his bleeding disorder)
  • "Maybe if you fed her a little less sugar... (In regards to our daughter with severe ADHD on the spectrum)
  • "You just need to lay down the law." (In regards to our daughter's behavior)
Probably the biggest violations of etiquette with special needs involve the comments of others.  Words can so deeply wound us because, whether intended to or not, they speak volumes about how we are judged by others.

For well-meaning commenters:

  • When you tell us what to do with our children when we haven't asked you for advice, you make us feel judged, incompetent, looked down upon.
  • When you see a family struggling, rather than judging or throwing advice at a person, kindly say, "It looks like you have your hands full.  Is there anything I can do to help you?"
  • You can bless parents tremendously when you simply state, "Tell me more about son/daughter" or "Help me understand...".  Then shut up and listen.  Being able to unload, to have someone interested in our story or to even find us worthy of listening to is a big deal for parents of children with special needs.
For parents receiving the remarks:
  • Take a deep breath when someone says something foolish and realize in your mind, "They don't know what they don't know."
  • Remember, you were once uninformed and ignorant as well.
  • Take the times of unsolicited remarks or erroneous comments as opportunities to educate others.  While you will have times that you are up to the task and times when you are not, always be mindful that our advocacy for our kids begins by educating those around us one remark at a  time.
  • A wise, old pastor of mine once told me that when we are not up to handling the comments of others, it is okay to be polite but firm and say, "Don't go there, my friend."  This warns people that their words are out of line and that you are not up to discussing it at the time.
So often it isn't even what is said, but who says it.  Those who mean the most to us can too easily wound us.  Be mindful of your personal boundaries and what you're up to hearing before you go into a situation where you know you will be exposed to the foolish remarks or advice of others.

Above all, remember who you and your child are in Christ.  That will help you repel the words of others with the confidence you have from being a child of the King.

PRAY:   Father, your words are life.  Help me to cling to Your words, building others up with what I say.  Help me to forgive others and their hurtful comments just as you have forgiven me.  And guard my mouth with your discernment and wisdom.

~ Barb Dittrich

Friday, June 21, 2013

SPECIAL NEEDS ETIQUETTE 101: "Call Me If You Need Anything"

I will call to You in the day of my trouble. For You will answer me.
~ Psalm 86:7, NLV ~

When discussing special needs etiquette -- what should or should not be said or done when a person has a child with a chronic illness or special need -- there are so many comments or actions that come up, it can be hard to know where to start.  So let's start at the beginning, with a comment parents frequently hear when their child is initially symptomatic or diagnosed.

After people allow parents to tell the story, inevitably the conversation ends with the well-meaning listener saying, "Call me if you need anything.".  While this is an incredibly comforting comment, knowing others care, let me give those of you who say this a news flash -- Nobody is going to call you!  Even if they wish they could, parents in crisis with their child usually do not have time or presence of mind to remember your offer of help.  Even if a family truly needs the assistance of others, pride may get in the way.  It can be a very humbling experience trying to finally track down help when you are caring for a child who requires so much attention.

So, how do we, the parents, resolve this breach of etiquette with you, the kind person offering help?  Here are some ideas.

For the parent:
  1. Use tools like CaringBridge to update people on your child's status and what your needs are.
  2. Have 1 friend or family member who runs interference for you, coordinating care for your typical children, and getting someone in to help you with housecleaning, gardening or laundry.
  3. When things are relatively calm, write down the names of those people who told you, "Call me if you need anything."  Call those individuals back and ask, "Were you serious when you said I should call you if I need anything?".  If their answer is "Yes," then proceed to tell them what your need is, checking to see if they might be able or willing to help you.
For the well-meaning person:
  1. Don't expect a person to call you if they need anything.  YOU call that parent, offering ways you might like to help.  You can be fairly certain that struggling families all need meals, gas cards, gift cards for carry-out food, help with laundry, help with housecleaning.
  2. Instead of "Call me if you need anything," perhaps you could say to a parent, "I'm serious.  What can I do to help?".  If that parent is not ready to answer you, offer to call them in another 24-48 hours to follow-up on how you can help with their extra needs.
  3. Offer to coordinate meals or house chores for the family using tools like Take Them a Meal.  This takes a great deal of stress out of the effort to help a family in need because everything is coordinated online.
  4. Consider being in the regular rotation for child care, house-sitting or pet-sitting if the parents need to be at the hospital with their special needs child.
A sweet, well-meaning, newer friend recently heard of the multiple hospitalizations our family had been encountering.  Of course, she ended our conversation with, "Call me if you need anything."  I laughed and said, "Thanks, but I'm not gonna call you."  She laughed back and said, "Okay, but I just want you to know that I am around and available if you need me to watch one of your kids or anything."  It was a great, comfortable way for both of us to be honest with one another, making our needs and intentions well-known.

That is, after all, the goal between people who care about one another.

PRAY:  Lord, help us to see one another's hearts when conversation is uncomfortable.  Be gentle with us when dealing with our sinful pride.  Soften us to being willing to ask for help when it is needed.  And help us to take the initiative to reach out to another person when they are hurting.  Jesus, make us love like you do.

~ Barb Dittrich

Photo Image Courtesy of 123RF

Wednesday, June 19, 2013

SPECIAL NEEDS ETIQUETTE 101: 7 Reasons Why It's Necessary

Since God chose you to be the holy people he loves, you must clothe yourselves with tenderhearted mercy, kindness, humility, gentleness, and patience.
~ Colossians 3:12, NLT ~ 

I've said it before many times, but I will say it again.  If I had a dollar for every foolish, hurtful, ignorant or inconsiderate thing someone has said to me since becoming the parent of a child with special needs, I would be a very wealthy woman.  Something in flawed humanity seems to make people feel compelled to share unsolicited advice or comments when they are least warranted.  I'm quite certain I was no better than others before I began down this different path of parenthood.

Now it seems to be these personal experiences that God has chosen to use as an avenue to bless others.  By His help alone, I have endured 13 years of roller coaster rides parenting a boy with severe hemophilia and anxiety disorder, followed by a daughter with severe ADHD, SPD, social deficits, asthma, and severe allergies.  This school year certainly hasn't been one of our best.  Our youngest daughter's transition into intermediate school has not been particularly smooth.  And our son has had his own set of bumps in the road.  But this past month has proven to be the great crescendo.  In late May our youngest daughter had a tonsil and adenoid surgery along with having both sides of her nose cauterized.  Complications arose when she had bleeding complications, followed by nausea and pain challenges that landed her inpatient at our local Children's Hospital for 4 days. Just as we began to see her begin to improve, our son wound up in the hospital for 2 days with internal bleeding.


The journey from September through early June certainly brings to the fore all of these clumsy and less-than-kind words and encounters involving those who don't typically operate in the special needs world.  When I found myself educating medical students in the hospital, I couldn't help but think, "Again?  Really?".  Yet, it's exactly such things that the Holy Spirit used to prompt me to begin a series like this.

So here are some of the reason why a series like "Special Needs Etiquette 101" is necessary:
  1. As stated before, people tend to say inappropriate things at a time when we are least equipped to handle it.
  2. Regardless of what people say, God calls us to offer them mercy, kindness, humility, gentleness, and patience.
  3. People are generally well-intentioned, yet clumsy.  They want to know what the right thing is to do in a particular situation.
  4. We are Christ's ambassadors.  That includes willingly educating those who don't know any better.
  5. Those who are not well-intentioned, but harsh and judgmental, need admonition and correction.
  6. People who do work in the special needs community like to know how they can become even better at helping families like ours.
  7. Families like us, who live with a loved one who has unique abilities, need tools and coping skills for those inevitable times when we are feeling beat down by the words or actions of others.
While there are certainly other reasons why a series like this might be fruitful, we would like our readers to be a part of this revelation.  We welcome you to tell us in the comment section, what  "Etiquette 101" issues you would like us to address in this series.  We will do our best to rise to the occasion.  

Meanwhile, please persevere in praying with us for a spirit of understanding and unity to result from these posts.  The best outcome would be if people could gain better insights, compassion, and cooperation in seeing things from another's point of view.

PRAY:  Lord, make me an instrument of Your peace;
Where there is hatred, let me sow love;
Where there is injury, pardon;
Where there is doubt, faith;
Where there is despair, hope;
Where there is darkness, light;
And where there is sadness, joy. 

O Divine Master,
Grant that I may not so much seek
To be consoled as to console;
To be understood, as to understand;
To be loved, as to love;
For it is in giving that we receive,
It is in pardoning that we are pardoned,
And it is in dying that we are born to Eternal Life.
Amen.
~ Prayer of St. Francis ~

Monday, June 17, 2013

"Know Thyself"

"Focus on your life and your teaching. Continue to do what I’ve told you. If you do this, you will save yourself and those who hear you."
~ 1 Timothy 4:16, GW ~

There is an ancient Greek adage that is also consistent with biblical teaching:  "Know Thyself".  From the time Adam disobeyed God through the letters Paul wrote to various churches, we see the topic of self-awareness addressed in God's word.  While it may sound like a bunch of psychological fluff, this concept can end up being a very helpful tool to parents raising children with special needs. 

Self-knowledge can be incredibly important in helping a parent to cope with the daily demands of caring for a child with any sort of diagnosis.  I make no secret of the fact that I am a huge fan of the Boundaries books by Drs Henry Cloud and John Townsend.  One lesson they teach in their book is that we all have limitations.  Knowing where those limitations lay is key to keeping others from pushing us too far.  Personal awareness keeps us functioning at healthy level without others or circumstances continually exerting inappropriate control over us.

Some areas of life where a parent might really want to know themselves, especially when they are responsible for a child with unique abilities can include understanding:
  1. What is acceptable and unacceptable in the context of my personal faith?
  2. What are my expectations of medical treatment?
  3. How do I feel physically, spiritually and emotionally after having a school IEP or 504 meeting?
  4. What are the things that make me particularly cranky?
  5. When do I reach my tipping point?
  6. Where do I feel closest to God?
  7. What types of things refresh me when I feel depleted?
  8. Which situations with my child(ren) are the biggest stressors on my marriage?
  9. How do I best identify resources?
  10. What helps me the most when I am in a crisis?
These may seem like relatively inane questions in the big scheme of life, but in fact, they are truly powerful reflections.  For example, my child recently faced an unexpected hospitalization.  Knowing that I am particularly vulnerable and exhausted after any hospitalization, I was able to cancel all meetings or responsibilities for the next 48 hours after a discharge, so I was able to adequately recover.  I allow myself that period of time in order to return back to a functional state, otherwise, I am at great risk for losing my temper, making poor decisions or taking on more than I can handle.  I usually also run a lighter schedule for the next month after a hospital stay to allow more wiggle time for follow-up doctor's appointments, family emotional recovery or even catching up with household chores and projects.

The point is, we do neither ourselves nor our family's much good if we are not keenly aware of what our limitations are, and how to adapt to those natural limitations.  Continuing to drive ourselves in an unreasonable way after major stress points in raising our children will only serve to multiply our problems and decrease our effectiveness.  Following through with that neighborhood party the weekend after a hospital discharge may not be a good option for you.  Hosting Bible study at your house the evening after (or before) an IEP might be a recipe for family conflict.  Be sensitive to such things is critical.  These are healthy insights that help us thrive in spite of the additional challenges our family may face.

Of course, God's word does remind us that, "The heart is deceitful above all things and beyond cure.  Who can understand it?" (Jeremiah 17:9, NIV).  This makes input from others important too.  Filter what others say, but note if you see a pattern to anything friends, family or coworkers are saying to you.  If many of them note that you seem overly tired at a given time, pay attention to when that occurs.  It is certainly not uncommon for personal pride to set in and for we silly humans to think we are capable when we are actually depleted.  Feedback from those who have proven themselves most trustworthy in our lives can be invaluable in gaining self-awareness.

Let me close our time together by saying that I write to you from a place of personal recovery.  I am always in peril of biting off more than I can chew.  What I have learned is that we are all vulnerable to overdoing it now and again, even when we have established good boundaries.  Being ever-mindful of the importance of self-knowledge will help us work our way back to a place of personal well-being when we stumble. 

PRAY:  Lord, You know me even better than I know myself.  Reveal to me those places where I need to make room to recover from the challenges that face me in parenting a child with special needs.  Help me to face my weaknesses with courage.  Go before me in repairing any damage I may do in my clumsiness, and teach me to alter my habits so that I heal rather than hurt in the days ahead.

Photo Image Courtesy of 123RF

Friday, June 14, 2013

For The Dad Who Takes No Delight In Father’s Day

~ by guest blogger, John P. Knight ~
 


But exhort one another every day, as long as it is called “today,” that none of you may be hardened by the deceitfulness of sin. (Hebrews 3:13, ESV)
 
If you’re a man reading this blog, you’re probably a dad of a child with a disability.  And if you’re like most of us dads, you didn’t choose this life. I’m guessing it is harder than anything you’ve ever experienced before.

You’re not alone.

I remember feeling alone, especially in those early months.  Nobody understood what it was really like, it seemed.  A social worker invited us to a parent meeting and that was even worse – they understood, but they were all so sad or angry or resigned to life. We didn’t go back to that parent group.

Those were dark days, made even darker when I realized the doctors and specialists and educators thought dads were mostly there as a checkbook and an insurance card.

And Father’s Day?  All those happy images of dads playing ball with their sons or fishing or just enjoying each other’s company certainly didn’t apply to my situation.

But God gave me a gift that I wasn’t asking for.  His name was Karl. 

He wasn’t a dad of a disabled child; he was ‘just’ a godly man.  There was nothing I could do or say that could stop him from having a positive regard for me, and I certainly tried to stop him.  He confounded me with his confidence in this horrible God who had done such a cruel thing to me as to give me a child with multiple disabilities.  He confused me with his love for me and for my family.  His entire family behaved the same way.

His hope in God was so unshakable in the face of all my contrary evidence that I wanted to be in his presence.

Then God crushed me by giving me a glimpse of my sin.  For the first time I knew that my son’s disabilities were not my primary problem – my sin was killing me and would keep me from God for eternity.

But for Jesus.

In faith I grabbed hold of Jesus as my righteousness and desperately wanted to know more about him.  In hindsight, I can see that it was all part of God’s plan to use my son to change me, to help me see that my sad, small, proud life was leading me to wasting my life here and an eternity of pain forever.

God also opened my eyes to all the men around me who loved me.  My father had been the first to really understand the value of my son.  My pastors never gave up on my when I had entirely rejected God and his people.

I met other men who shared just two things with me – they parented a child with a disability and they believed Jesus was their source of hope and joy.  All the other differences between us melted away.  Economics, ethnicity, educational background, geography, age – none of it mattered in light of our common experience of being held by God in Christ and living this life of disability.

Something even stranger happened.  These ‘as sorrowful yet always rejoicing (2 Corinthians 6:10)’ men who had been at this longer than I have seemed to know that my sadness at yet another hard circumstance was not permanent or evidence of doubt, and they would encourage me.  They also had been given insight into when sin, like bitterness or anxiety, was starting to take root, and they would exhort me and equip me to fight even as they fought for me.

And the fierce, frightening passions of young dads new to disability didn’t frighten me.  I know the flames they are walking through, and I know the Savior who can help them is very big and very strong.

Maybe the strangest thing of all – joy rises out of the depths of the sorrows related to disability.  New, masculine affections emerge that make both laughter and tears come quickly.  The pain is real and the joy is real. We know our King does all things well, even in the hardest of circumstances.

God has promised to supply every need of ours (Philippian 4:19) and in my life that has frequently been other godly men.

If you’re trying to do this life of disability alone, please stop, for your own sake as well as for your child with a disability, your other children, and your children’s mother.  Ask God to help you find godly men who will walk with you and help you. If you’ve been disappointed in how some men have behaved toward you, if you have felt abandoned even by your church, remember that only God is perfect and only he will never disappoint you.  Trust him to supply what you need.

And someday we’ll truly understand that this hard life was just a precursor to something beyond our imaginations:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18, ESV)

 
PRAY:  Lord, for the dad who takes no delight in Father’s Day today because of his child’s disability, please awaken him to the reality of your incredible goodness and mercy and strength.  Give him a man who will encourage and exhort and love him as Jesus taught us to love.  For the dad who lives in the joy of his new birth in Christ, give him eyes to see the man who needs a masculine, hope-filled, God-centered brother, and then equip him with the wisdom to truly help in ways that give life and hope.  Please, Father, show your awesome capacities to provide peace where there is no peace, and hope where despair has reigned too long, for the sake of your great name and the hope of those you call from death to life.  In Jesus’ name, Amen.


John Knight is married to Dianne and together they parent their four children: Paul, Hannah, Daniel, and Johnny. Paul lives with multiple disabilities including blindness, autism, cognitive impairments and a seizure disorder. John is Director of Donor Partnerships at Desiring God and occasionally contributes to their blog on issues of disability. He also blogs on disability, the Bible, and the church at The Works of God.
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