Wednesday, July 31, 2013

Treating Our Teens With Dignity

Treat everyone you meet with dignity. Love your spiritual family. Revere God. Respect the government. ~ 1 Peter 2:17, MSG ~

Don't you hate it when your own advice to others comes back to haunt you?  I recently heard one of my oft-recited phrases ringing in my own conscience.  "Just when you think you have it all figured out, you don't have it figured out."  The truth of those words stared me in the face as I found myself suddenly dealing with a chronic diagnosis in the 3rd of my 3 children.

Our eldest daughter is a trooper.  She was just 3 years old when special needs set up residence in our house at her brother's birth.  Although she went through the predictable stage of jealousy with the attention her two other siblings receive, I have had the privilege of watching God mold her into an incredible young woman.  Selfless, possessing a strong moral compass and the courage of her convictions, I eagerly watch to see how the Lord will use her in adulthood.  She is a hard worker and typically, not a complainer.  So when recurring stories of joint pain mounted over the past 6 months, I knew something was not right.

As soon as we had recovered from first her younger sister, then her brother being hospitalized early this summer, it was her turn to march in the doctor parade.  We began with the pediatrician.  When the test results he received weren't optimal, he referred us to a rheumatologist.  Now we find ourselves with blurry answers, treating symptoms rather than known diagnoses, a trail of new doctors' appointments, and praying as we wait.

Interestingly, this has ushered us into a new phase of parenting children with special needs.  While her brother was just beginning this phase at the age of 13, our eldest child is solidly in it at 16.  These are years of taking personal ownership.  Parents are not necessarily at liberty to discuss their child's health status with others as they were in their younger years.  For instance, our son doesn't necessarily want everyone knowing that he has a bleeding disorder.  He needs to be brought into the mix and to be asked if it is okay with him that we share certain facts with others.


When our eldest began this health journey, my first instinct was to let those who care about her know what was going on by building her a Caringbridge page, just as I had for my other children.  With her own set of friends, her own social life, and adulthood only a couple of years away, I had to rein myself in.  Treating her as the remarkable young woman I know her to be means that I must allow her some level of respect and privacy.

What does treating a teen with dignity look like?
  • Ask if you may share your teen's story with others.  If so, whom?  How much may be shared?
  • Engage your teen in the process of sharing.  Let them update blogs explaining how they are feeling or sharing their major accomplishments.
  • Train and educate your teen on how to assume the roles of self-care and self-advocacy when it comes to the medical system.  This means teaching your child to fill out medical forms, how to describe symptoms so a doctor might actually take you seriously, how to push for answers or be firm in preferred methods of treatment.
  • Guide your teen through praying over health concerns.  As you pray out loud with and for them, they learn how to take their pains and worries to the Lord themselves.
  • Allow them to test their own limitations while under the safety of your own roof.  If you do not think that your child is going to take some risks in relation to their diagnosis once they leave the house, you are kidding yourself.  Why not create the opportunity for them to fail, within reason, while you are still there to help talk them through that risk-taking?  Not only will it allow them to spread their wings, but it will also build an increased bond of trust between you.
These are not easy behaviors for us parents to incorporate.  We have been taking care of our children all of these years, yet now, we need to loosen our grip.  The teen years demand we develop new habits and mindfulness.  Yet, if we can approach it in a way that grants our children some level of dignity, our efforts will be well worthwhile.

PRAY:  Father, help me to hold my child with an open hand.  Holy Spirit, grant my teen the safety of your watchful protection during this transitional phase.  Guide me to treat my offspring with the same respect that you want me to give every other human on the face of the planet.

Monday, July 29, 2013

U ASKED 4 IT: 5 Ways to Combat Feeling Totally Inadequate

Today's post concludes our 3 part series featuring topics for which parents have recently requested an encouraging word...

When I was with you, I was weak. I was afraid and I shook. What I had to say when I preached was not in big sounding words of man’s wisdom. But it was given in the power of the Holy Spirit. In this way, you do not have faith in Christ because of the wisdom of men. You have faith in Christ because of the power of God.
~ 1 Corinthians 2:3-5, NLV ~ 

"God never gives you more than you can handle."  This pervasive lie from the pit of hell is well known to those who suffer.  Parents raising children with special needs certainly have this platitude thrown at them more than they care to hear.  Is it any wonder we feel so completely inadequate at times?

Like a two year old who can't reach something on a high shelf or a preschooler who can't master tying their own shoes, we can get so very frustrated trying to care for our precious, remarkable kids.  We feel poorly equipped for what we are trying to accomplish, and our goals are just beyond our reach.  Our frustration can turn inward, causing self-condemning thoughts.  Yet, would we accuse an aggravated child who can't achieve what they have in mind of being inadequate?

In writing on this topic, I can't help but have all the times I have been overcome by feelings of inadequacy come flooding back at me.  There have been the times where I followed the doctor's orders to the letter, but I still couldn't prevent crisis medical traumas from occurring.  There have been the times where I have been so cooperative with school staff, and yet, have gotten nowhere with improving my child's school challenges.  There have been the countless times I have been judged by others as a "bad mother" because of my children's behavior or health issues.  And the thing that has made me feel most inadequate has been the times where every one of my children and my spouse are simultaneously in a place of need that cannot be satisfied, regardless of my efforts.

Inadequacy is a feeling closely tied to desperation.  And desperate times call for desperate measures.  So here are some radical recommendations for you:
  1. Realize that perhaps God wants you to feel inadequate.  In 2 Corinthians 12:7-9, Paul tells us, "But to keep me from being puffed up with pride because of the many wonderful things I saw, I was given a painful physical ailment, which acts as Satan's messenger to beat me and keep me from being proud. Three times I prayed to the Lord about this and asked him to take it away. But his answer was: 'My grace is all you need, for my power is greatest when you are weak.' I am most happy, then, to be proud of my weaknesses, in order to feel the protection of Christ's power over me." (GNT)  The great truth to refute the lie of God not giving us more than we can handle is that God does allow more than we can handle at times, so we learn to rely on him.  The Lord reveals himself as the God of the impossible situation where no man is capable.  His power is made perfect in our inadequacy.  Believe it or not, you bring the Lord incredible glory when you are feeling less than capable and rely on Him to redeem a situation.
  2. Check you self-expectations at the door.  Along those same lines, we must come to the realization that we are not God.  We all have short-comings and limited abilities.  No parent, especially one raising a child with extra challenges, can run at break-neck speed all the time, perpetually expecting perfection of themselves.  Know that this parenthood calling of yours is difficult enough to require help.  You are not a complete failure because you are unable to do this on your own.  Exchange those unreasonable self-expectations for a new self-acceptance.
  3. Be willing to reach out to others.  During those times where the burdens are heavy and the challenges greater than you can bear, ask others for a helping hand.  Trying to play the superhero by doing everything on your own only sets you up for those depressing feelings of inadequacy.  God made us relational creatures.  He never meant for us to face life all alone.  You actual deprive others of blessings that God has intended for them by not letting them help you when life gets to a point of overload.
  4. Adopt good emotional boundaries.  When we live life enslaved by the expectations of others, we we will not only disappoint them, we will disappoint ourselves.  We are not responsible for the faulty expectations or judgments of others.  Realizing that when people judge you, "they don't know what they don't know", will set you free.  They are speaking from a place of ignorance.  Having confidence in this will strengthen you against feelings of inadequacy spawned by the demands and criticisms of others. 
  5. Know that disability or not, our kids can be little hedonists.  Trust me, my kids know how to play their special needs for all they're worth when they want something from me.  The worst thing I could do is to let them manipulate me into feelings of guilt and compliance with their every whim.  Despite their various challenges, they need to learn that the world does not revolve around them, they have to wait like everyone else, and they don't always get what their little hearts desire.  It is not my purpose in life to make them happy.  Instead, I am called to love my Maker and raise children who do the same.  Coming to full knowledge of this has transferred my mind from feelings of inadequacy to a passion for growing my kids into productive, self-motivated, considerate, Jesus-loving members of society.
Walking in constant feelings of total inadequacy only renders us less effective in dealing with the challenges of raising these precious children.  Like any other habits, these means of combating feelings of total inadequacy take practice.  And those feelings will still creep in from time to time.  However, we need to persevere in talking back to "the accuser" and challenging those emotions when they creep back in.  If we can't shake these feelings on our own, there is no shame in bringing in reinforcements, seeking the wisdom of a professional counselor or psychotherapist to help us.   

PRAY:  Thank You, God, that your power is perfect in my weakness.  Jesus, apart from you, I am completely inadequate.  I praise You that you have come to our rescue!

Photo Image Courtesy of: FreeDigitalPhotos.net

Friday, July 26, 2013

U ASKED 4 IT: 5 Ways to Love the "Unlovable"

Today's post is part 2 in a 3 part series featuring topics for which parents have recently requested an encouraging word...

 Let everyone know how considerate you are. The Lord is near.
~ Philippians 4:5, GW ~

If I had one warning to give to Christians about to head into the journey of parenting a child with special needs (as if you could always be forewarned about this becoming a part of your life), it is that your Christ-like character will be tested every single day.  Advocating for our children with family members, neighbors, educators, medical professionals, and even strangers can frequently put us in a contentious position.  How we respond to situations where we find ourselves at odds with others can be the difference between reflecting God's glory to the most unlikely of people, versus merely sinking into the ugliness of the rest of this world.

Early on in our son's diagnosis with severe hemophilia, this became painfully apparent to me.  Having had two nephews who introduced us to the existence of this genetic illness in our family, I had already been volunteering in the bleeding disorders community for years when our son was born.  When he was barely a month old, we were so connected that we already found ourselves at our first patient  conference.  Friends wasted no time connecting us to another set of parents who were a few steps ahead of us. 

While they were very kind to us at the time, it did not take long to learn that this "mentor" couple did not share our world view.  The mother, in particular, took a very abrasive approach towards people with whom she did not agree.  Even if people asked her about her sons' disorder in public, she was caustic with her responses.  She had no trouble getting into fights with doctors and telling them off.  And educators got to enjoy her thorny personality as well.  This approach certainly didn't fit with our belief in Jesus' command to, "Love one another as I have loved you." (John 13:34)  In fact, that's where God led us to establish SNAPPIN' MINISTRIES.

Over the years and a couple more children with diagnoses later, we have learned much about being loving to the "unlovable".  That learning has come courtesy of all sorts of people who have been offensive, rude, judgmental, or who have abandoned us.  It has also been learned through frustrations with multiple educational, medical and financial people.  I think fewer things will push your Christianity to the brink than being sleep deprived, concerned about your child, trying to process all sorts of information, while having to put up with another person who is irritating, not nice, understanding or cooperative.

However, here's how we have attempted to reflect God's glory when we might prefer to strangle another person.
  1. Take a deep breath and apologize BEFORE you blow your stack.  From dealing with insurance companies that refuse to pay bills to school district personnel pulled in on meetings, I have learned that I can diffuse the situation and set a better tone when I start by saying, "I'm just going to apologize in advance.  I know this isn't all your fault, but I am at the end of my rope and I am probably going to lose it while we're talking."  Those simple words have redeemed so many conversations in the past.  This gives the person on the receiving end the understanding that you are not a complete jerk, just someone who cares deeply for their child and who needs to solve a problem. 
  2. Remember that the "unlovable" or difficult person may be having a bad day themselves.  Every human being is a mess in their own special way.  There are just varying degrees of how that might be displayed.  As a Christian, wouldn't you feel terrible if you were nasty to someone only to discover that they had lost a loved one that day, or discovered they have cancer, or were in the middle of a nasty divorce?  Show people the same mercy you would want on your bad days.
  3. Realize that while you are finding someone to be a pain in the neck, another person is likely finding you to be their pain in the neck.  In this life, we all bump into one another.  We have annoying habits and personalities.  That includes you.  If you think that everyone you come into contact with finds you a delight to be around, you are deluding yourself.  There was only one perfect person ever to walk the face of the earth, and He is preparing a place for you in heaven right now.  Again, treat a person you find irritating just the way you would want to be treated by the person who finds you to be irritating.
  4. Be firm, but fair.  Despite our best efforts to be kind, all of us find ourselves in situations where confrontation cannot be avoided.  This is where you need to learn to use phrases like, "I respectfully disagree," "I'm sorry, but that is unacceptable," or "Thanks for your input.  I'll think about that."  Being respectfully assertive is not only necessary when you must go to bat for your child, but if done in a godly manner, may even win you respect in return. 
  5. Have good boundaries.  As I said previously, every one of us has difficult people we must come into contact with in our lives.  How frequently we must be with those individuals can truly tax our ability to cope.  Make certain that you are not "friend-ing" someone on Facebook who you have a tough time putting up with.  Be willing to switch doctors if you are unable to work with your current physician.  And if you want to maintain a relationship with that person who stretches you, "agree to disagree" on the areas that cause the most friction.  All of these little fences-with-a-gate around your heart will save your sanity by allowing in the good while keeping out the bad.
As with any other skill in life, the more you practice these techniques, the better you will get at them.  We all lose our cool with others from time to time, but with a godly approach, our loving behavior can  increase over time.  Of course, praying for the one you dislike is a command straight from the mouth of God that also helps.  (See Matthew 5:44)  Remembering that Jesus died for that other person just the way He died for you ought humble you and motivate you to be loving, no matter who the other person is.  This is how we can better reflect God's glory no matter what our opinion of another person.

PRAY:  Holy Spirit, remind me that there are truly no unlovable people, just unloving attitudes.  Grow me as I put new approaches in place to be loving to those I don't like.  Remind me that you died for the person I like the least, just as you did for me.  Make me a reflection of Your glory to everyone I meet.

~ Barbara Dittrich

Photo Image Courtesy of 123RF



Wednesday, July 24, 2013

U ASKED 4 IT: 5 Ways to End Isolation

Today we begin a 3 part series featuring topics for which parents have recently requested an encouraging word...

Turn to me and be gracious to me,
    for I am lonely and afflicted.
~ Psalm 25:16, NIV ~

I always wanted to be a mother.  I had no preconceived notion of what it might be like.  I just knew that I always wanted to have and raise a child.  When a successful pregnancy eluded us, great fear and emptiness washed over me.

Certainly, raising a child with special needs never entered my mind.  I often tell of the foolish belief I had that we had met some sort of "trauma quotient" because of my repeated miscarriages and subsequent infertility treatment.  Little did I know that the Lord was preparing me to be a great medical advocate for the treasures with whom He would later bless me.

Yet, in all the pain we have experienced on our various journeys, I think the most agonizing part has been the isolation.  When everyone else was having babies, we were kept at a distance because we weren't able to build a family yet.  When we began having children with special needs, the sense of abandonment grew even worse.

The loneliness of parenting a child with special needs can be like a many-faceted piece of black coal.  On one side, your neighbors may reject you like ours did, because our family wasn't "normal" enough for them.  On another side, you experience the empty hours of waiting in doctor's appointments, at therapies, and in hospitals.  Still another side cuts you when your child is left out of things by peers because of their diagnosis.  And an extra painful facet of the journey can come when your spouse isn't on the same page as you in the experience of raising your unique offspring.

I thank God that He has taught me so many things through "the school of hard knocks" in regards to ending this horrific isolation.  Allow me, if you will, to share with you what I have learned:
  1.  Get off of yourself.  It may sound harsh, but this is literally something I have had to repeatedly tell myself.  Fighting a lifelong battle with chronic depression, I can safely say that nothing releases me from my own pain like focusing on someone else.  If you can find a way to volunteer at your child's school, at church, or at your favorite charitable organization, it helps you as well as others.  (Shameless plugSNAPPIN' MINISTRIES is always looking for volunteers.)  In doing so, you will meet others who are serving and may end up making new friends with those who have a heart for your journey.
  2. Join community groups.  Local support groups offer connection to others who are raising children just like yours.  Not only will you glean some of your best special needs parenting information and advice from these individuals, you will connect with a unique compassion that comes only from others who are walking a mile in your shoes.
  3. Attend conferences and workshops.  These venues often provide special needs childcare while you connect to helpful information.  Again, this is a great place to meet other parents just like you.  Often, you can apply for scholarships to attend and leave feeling very empowered as a self-advocate.
  4. Plug in to online communities.  Much like the local groups, online communities connect you to other parents.  There are as many types of online groups as there are preferences.  You can connect through virtually every sort of social media, and find other parents by geographical area, diagnosis group, age group, religious denomination, or treatment method.  Because these types of groups can be participated in from virtually anywhere, they can do much to alleviate isolation because you can connect whether confined to home, clinic or hospital.  
  5. Find a mentor.  The value of doing life alongside someone who is on the same journey, but a couple of steps ahead of you has long been extolled.  Since 2003 there has been a national secular program to match parents to other parents raising children with special needs.  We are thrilled at SNAPPIN' MINISTRIES to offer the only faith-based mentor program for parents of kids with unique abilities.  In our program, you can mentor and be mentored from the comfort of your own home, anywhere in the nation.  You can read a bit more about our mentor program in my previous post Show Me The Way.  
God made us to be relational creatures.  When we lack those relationships, along with the support they provide, it is normal to experience pain.  Be encouraged by knowing that you have more power over ending your isolation than you may think.  And when even these best personal efforts leave you feeling alone, ostracized or abandoned, please know that there is always Someone who is only a prayer away.  He experienced those same painful feelings you do, and conquered them forever by the power of His Salvation.

PRAY:  Jesus, thank you for not only conquering the power of the grave, but also for conquering the oppression of isolation.  Deliver me when I feel so alone.  Guide my eyes to look beyond my own troubles, to reach out to others who are also feeling isolated.  When I feel most cast aside, bring to my memory how You suffered the same pain and made a way for me to overcome it.

Photo Image Courtesy of 123RF

 

Monday, July 22, 2013

When Little Things Are Big Things

Praise the Lord, my soul;
    all my inmost being, praise his holy name.
Praise the Lord, my soul,
    and forget not all his benefits—
who forgives all your sins
    and heals all your diseases,
who redeems your life from the pit
    and crowns you with love and compassion,
who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.

The Lord works righteousness
    and justice for all the oppressed.
~ Psalm 103:1-6, NIV ~ 

America has a broken perception of reality.  In this nation, we have gone far beyond "a chicken in every pot" to a warped sense of entitlement.  It has become reflex in our country to assume that "normal" life involves a nice suburban home, 2 cars in the garage, the latest Apple device, well dressed kids, and a big vacation each year the likes of Disney or some other notable destination.  If we don't have these things, those controlling the narrative would have us believe that we are greatly lacking or something is terribly wrong.  In fact, statistics still show the vast majority of American households living on an annual income of $50,000 per year or less.*

While we have free will to adopt the world's view of such facts, our best hope comes in adopting a godly view of such news -- every good thing in our lives is a blessing from the hand of the Lord.  Nowhere can that be witnessed like it can in the lives of Christ-loving families raising a child with special needs.  Yesterday, I had the great privilege of passing on a terrific blessing that God made possible through generous benefactors.  Our ministry held our annual picnic at a premier water park hotel in our area.  The families were fed a beautiful spread of "picnic food" including items suitable to the gluten-free crowd.  The kids couldn't wait to get their hands on the ice cream novelties for dessert, and there were rave reviews about how good everything tasted.  The staff was so incredibly kind and accommodating to the families as well.

After enjoying the lunch, families headed into the water park for some lavish water fun.  Kids were able to splash  and spray from all the gadgets mounted on climbing towers and slides.  Little ones could enjoy crawling at the edge of a zero-entry pool with small fountains bubbling up from the floor.  One pool with a more traditional depth sported multiple basketball hoops for the energetic to enjoy.  The truly adventurous made multiple climbs up 2 stories of stairs to ride down screaming-fast tube slides upon rafts or inner tubes.  And of course, there was the ever-famous lazy river.

Words can barely capture the wonderment of seeing what this small miracle of water could produce.  I couldn't help but get choked up as I watched wheelchair-bound children set free by floating in their parents' arms.  Anxiety-laden children were smiling as they were soothed by cascading streams.  One teen even learned the beauty of a simple wax ear plug set to help drown out the noise.  Witnessing the whole spectacle truly moved the heart.

What I heard from families was a deep and sincere gratitude.  People expressed that without the generosity of those who make such an event possible through their donations to SNAPPIN' MINISTRIES, they would never be able to afford such a delightful afternoon.  I know my own family certainly wouldn't!  With medical bills ever-knocking upon our doors, and the income usually running more in the area of reality rather than fantasy, our families don't have the means to pay for such things that many might take for granted.  The little things are big things.

Perhaps, in many ways, these types of financial challenges and strains can be considered a blessing to families like us.  Because we know that every good thing comes to us by the Lord's hand, we are much more able to enjoy life's simple pleasures.  While the sorrow of our adversity can be so incredibly heavy, it takes so much less than ever before to bring us a smile.  What a true blessing that is!

PRAY:  Father, I know that every good and perfect gift comes from Your hand.  Thank you for opening my eyes to life's simple blessings.  Let me never be so focused on the sorrow that I miss the joy that You have placed in front of me.

*Statistics via Household income in the United States From Wikipedia, the free encyclopedia

To view more terrific photos from our fun at Country Springs Water Park Hotel, visit our Facebook photo gallery.

Friday, July 19, 2013

SAVING SUMMER: Smooth Sailing

You pick me up and let the wind carry me away.
    You toss me around with a storm.
~ Job 30:22, GW ~

It was a wildly windy Summer day when we newlyweds decided to venture out on our Hobie Cat.  Giddy with expectation, we ran down to our pier.  It wasn't often that we had enough of a breeze in the evening that we could take out this craft, two pontoons with a canvas stretched between them, and a sail reaching to the sky.  I was clueless about sailing, other than I knew to duck and move over when the captain of the craft said we were going to "come about."  That surely didn't stop me from enjoying how fast we were screaming across the lake, even getting up on one pontoon as we sailed.

Unfortunately, my beloved wasn't the world's most experienced sailor.  Not having set any particular course and adjust the sails accordingly, we found ourselves stuck in a bay that we could not escape in the wild zephyr.  It was as if we had been painted into a corner.  There was no tacking to escape where we found ourselves trapped.  Eventually, we had to drop the sail, beach the craft and find someone who lived lakeside, willing to tow us back home.

Who knew that decades later, our Summer raising children with special needs would look much like this tumultuous catamaran ride?  It's a journey that so many others like us can identify with.  Just like that fateful lake cruise, we look forward to those warm months for some rare enjoyment with those we love.  With great anticipation we bound into the time at the end of the school year, feeling freedom, and a sunny lightness.

It certainly isn't unusual for us to quickly learn that, just like the wind on our ride, things are a little out of control.  We're pushed along by something that is too strong for us to handle on our own.  Feeling ill prepared to deal with this, we fail to adjust our sails accordingly and have no course planned.  It's not long before we feel trapped, panicked, and completely helpless to get ourselves out of the situation we are in with our kids at home.

That's when we need to drop the sail, pull our boat to shore, and ask for some help.  God is glad to give it.  He is ready and able to pull us through the most battering, chaotic circumstances we find ourselves in.

Maybe that's the true message of these Summers that need saving.  We must remain ever-aware that we can do nothing apart from God's help.  Our trust for Him is not misplaced when we find ourselves wondering if we will ever get out of life's ugly messes.  Living one moment at a time, just doing the next right thing, lowering our expectations, and loving our family right where we're at is enough to redeem this season.  And eventually, as we press in to the tender care of our Maker, we will find smooth sailing.  Not that our circumstances will necessarily be trouble-free, but the One who controls the wind and the waves is surely strong enough to carry us through.

PRAY:  Jesus, silencer of the storms, quiet the turmoil inside of me.  Redeem these remaining days of Summer for our family.  Help us to be more longsuffering with one another.  Get us through the challenges, and leave us with happy memories of Your countless little blessings as our season together ends.

Wednesday, July 17, 2013

SAVING SUMMER: Remembering the Good, the Bad and The Ugly


Remember the amazing things he has done.
    Remember his miracles and his fair decisions.
~ 1 Chronicles 16:12, ERV ~

Face it, the entire genesis of this "Saving Summer" series is confronting the fact that we parent raising children with special needs can often find ourselves facing these months of June, July and August with trepidation.  These can be days we would rather forget.  A different schedule, special occasions, likely less structure, and so much more can make Summer stressful rather than fun.

Yet, as we look to redeem this season, perhaps the best thing we can do is to remember these days.  A number of years ago, I wrote about a terrific book that lives with me to this day entitled SABBATH KEEPING by Donna Schaper.  In the book, the author makes the case that we should pause each week to look back at what God has brought us through in order that we might be strengthened for the days ahead.  How true this is for the trying times we experience over Summer vacation!  I have taken many photos over the years that I've looked back on exclaiming, "I just can't believe God got us through all that!"  It has been a deep blessing to reflect on those photos, and gain encouragement from them.


With that in mind, I have the perfect, easy project for you to do either for your family or along with the kids.  Years ago, a friend taught me the gift of putting together a small flip photo book with treasured photos along with relevant Scripture verses.  You can regularly change the featured photo as you enjoy the easel-backed display in your home.


This is such a treasured keepsake, and reasonably easy to do.  While there are many ways to put the book together, here are the materials you will need:
  • The flip book.  If you would like to keep the project inexpensive, you can get a chipboard, spiral bound 6 x 8 book (like the one at the top of this post) at Oriental Trading.  If you would like to spend more money, you can consult Creative Memories for a book similar to the one I used just above. 
  • Of course, you will need your photos, your Bible, and supplies such as paper, double sided tape (they make some just for photo mounting), fine point pens, and stickers or letters to embellish, if you like.  All of these supplies can be found at places like Target, Walmart, and craft stores like Michaels.
In assembling this little flip memory book, recall this Summer's good, bad and ugly.  Search for a word from God regarding those moments he has seen you through this year.  You may have to deeply ponder what photos to use because the times are rough.  But, you can even turn still shots like the one below into a memory of encouraging hope.

When you record this Summer, with all it's difficulties and small miracles, and reflect back on these days in years to come, you will be able to do your own "holy remembering," as you experience the truth of King David's words, recorded in 2 Samuel 7:18, “Who am I, Sovereign Lord, and what is my family, that you have brought me this far?"

PRAY:  Father, every good thing in our lives come from you.  Even when days are tough, you bless us with your presence.  Small miracles are woven throughout our trials.  Help me to record these memories to look back upon.  Thank you for making a way for me to be encouraged during challenging times.
Photo Image Courtesy of: FreeDigitalPhotos.net

Monday, July 15, 2013

SAVING SUMMER: Regrouping

God is not a God of disorder but a God of peace...
~ 1 Corinthians 14:33, NOG ~ 

Chaos.  This overwhelming feeling of disorganization and lack of structure can definitely tip our scales in the direction of stress.  Summer is a break from the structure and relative predictability of the school year.  Yet, it can feel like so much more.  Too often it can feel like we are driving at 100 miles per hour with no windshield, repeatedly lifting our hands and arms to deflect what comes flying at us.

Many families are blessed to have good structure around their ESY (Extended School Year), great caregivers and respite, or fabulous inclusion programs to plug into for a Summer rhythm that is all its own.  Some of our kids with chronic challenges can avail themselves of team sports or ongoing day camps that provide some stability to the Summer months.

Yet, so many of us are afraid to confess the months that are typically the best time of year for the rest of the world, are really the most difficult for us.  When our caregiver is off some weeks on vacation or not as available in the Summer, it can make juggling our entire family blindingly chaotic.  When we are running for camp or sports check ups in addition to regular treatment, it stirs up the emotions we feel towards our child's diagnosis.  When those necessary surgeries are scheduled so our children don't miss any school days, those weeks are focused on little else than recovery.  When the temperature, the food, the activities, and the company are all different than usual, it can most certainly contribute to agitating our children, sometimes even subtly. 

With this discouragement smacking us down during a season that is delightful to others by contrast, it is easy to lose sight of who we are as people, what defines us, where we are headed, and to whom we belong.  That loss of grounding, of identity, can only add to our overall sense of overwhelm.  That is why it is essential that we take another important step in saving our Summer -- regrouping.
  
Here are some ways we parents might take a deep breath, "pull the car over to the side of the road" for a bit, and reexamine where we're going so that the remainder of the Summer ends up being fruitful:
  1. Keep getting up as early as you would for the school year.  While not all of us are morning people, this will afford you some quiet time before the demands of your day kick in.
  2. Get some exercise outside to clear your head.  Perhaps with those moments you have in the morning, you might go for a walk, ride a bike or go swimming.  Study after study shows the benefits of physical exercise, not only physically, but mentally as well.
  3. Do some personal writing.  Take some time to examine what your greatest hopes are for your child.  Think about what defines you personally and as a family.  Ponder how the remainder of this Summer might fit into those goals and what is important to you.  If things are not going so well during these months, try to gain perspective by realizing this is only a small part of the big picture.  Years from now, you will likely be able to look back on these days and say, "I can't believe God got us through that!"
  4. Read God's word and pray.  When the kids are home and the pressure is turned up, this may mean that you have to read and pray in "bite-sized pieces."  A brief devotional reading every day is enough to keep you connected to your Creator.  The benefit in this is that you will keep your ear trained on hearing his voice, and you will more easily be able to remember who you are in Christ.  Knowing His promises, His love and how He provides for us is tremendous comfort to calm us in life's stressful seasons.
  5. Decide what you will do to make the most of the time that remains.  The school supplies are already on the store shelves for this next school year.  There is still time left to create some memorable moments as a family.  Get your calendar out now and pick some specific dates to do some specific things you cherish.  Whether it be a craft project, a visit to a special place or even enjoying a favorite food together, be sure to leave this Summer with some fond treasures that you can look back on in the years ahead.
Summer may not be perfect in our world, but it can still be redeemed.  When we are able to regroup, we can breathe a sigh of relief and redefine what a good Summer looks like for ourselves and those we love.

PRAY:  Oh, Lord, help me make the most of every moment.  I get so frazzled.  Help me to find quiet moments to gain clarity of heart and mind.  Thank You for the reassurance that you can make order out of my chaos, because You are a God of order.

Photo Image Courtesy of 123RF

Friday, July 12, 2013

SAVING SUMMER: Serious Self-Care

You have taught me
 since I was a child,
    and I never stop telling about
 your marvelous deeds.
~ Psalm 71:17, CEV ~

"My job is to train myself out of a job!"

"I need to know you can take care of yourself if I get hit by a Mack truck."

I have uttered these words to my children since they were preschoolers.  Keenly aware that it was my job to prepare my chicks to one day leave the nest, I have trained my children towards adulthood.  This has not only included age-appropriate chores, but from little on, enabling and shaping them to become good decision-makers.

Yet, special needs have certainly provided a stumbling block in several areas.  How could I have anticipated my son developing PTSD (post-traumatic stress disorder) as a result of being jabbed repeatedly with needles and IV catheters when he was little?  Anxiety set up house and refused to move out.  There was no cooperating with the every-other-day infusing, let alone beginning the recommended course of learning to self-treat around the age of 8.

I will use some other opportunity to tell you of the years of psychotherapy, medications and treatment it took us to help our son with his horrific needle anxiety.  Suffice it to say for now, things came to a head late last November, which led us to a fabulous psychologist who has successfully been treating our son with CBT (Cognitive Behavioral Therapy) every-other-week since that time.  He has made far more progress than we ever could have hoped for.  And while the Summer may seem like a bust in the traditional sense, our son's march towards self-care has made these months well worthwhile.

Summer is a perfect time for our children with special needs to learn valuable self-care skills.  Without the pressure, the rush and the time constraints of the school day, we can spend more time in the school room of self-treatment.  Whether it is getting our kids into a habit of their own home physical therapy schedule, teaching them how to administer their own asthma inhalers, or test blood glucose levels, we parents can find a bit of calm in the warmth of the Summer months that's perfect for taking our time to train our kids in these essential skills that they will carry with them into adulthood.  Simple steps like learning to order refills of their prescriptions or setting up the items needed for their treatment might be a good place to start.  

I realize this is frightening territory for we mothers.  We are fearful.  Letting go and giving control over to our children in increasing measure means that one day, we may not be able to protect them in the zealous way we have when they are in our charge.  But let me encourage you.  Each Summer can serve to teach just a few of the necessary skills.  It can come in manageable increments.  My son is learning to self-infuse this Summer!  It requires great patience, as well as keeping my mouth shut.  Yet, it is so exciting for me to see him empowered!  This move will give him such freedom.  Next Summer he will be able to go on his first mission trip, perhaps without even one of his parents being along.  

My daughters are also learning medical self-advocacy. 

"Listen to the family medical history I give the doctor," I have told my 16 year old.  "You will need to be able to remember this on your own one day."

"Okay, sweetheart.  Don't joke around when you tell the medical staff your symptoms or they won't know how they can really help you," I warn my daughter with social challenges.

The Summer may not be that storybook season that typical families enjoy.  Still, we parents can relish these months, remembering them as the year our child stepped towards more serious self-care.  And that is certainly something we can be proud of!

PRAY:  Spirit of wisdom, You guide us through every step of life, even praying for us when we are at a loss for words.  Bless these Summer months with patience and perseverance as we avail ourselves of the opportunity to address these complicated skills.  Grow our children to be good self-advocates, to the best of their ability.  Thank You, Father, for redeeming this time.

Wednesday, July 10, 2013

SAVING SUMMER: Smiles, Skills & Social Graces

God speaks in different ways,
and we don’t always
    recognize his voice.
~ Job 33:14, CEV ~

It's easy to feel defeated, like the joy of Summer is slipping through our fingers as we sit on the "ash heap" of parenting a child with special needs.  Job questioned again and again what God was up to when so much tragedy befell his life.  His "comforters," who weren't of much comfort at all, did have some valid points.  In today's Scripture verse, Elihu reminds Job that God does speak in various ways, though we may not always perceive it.

While such a statement may have been originally intended to make a friend "'fess up" to the guilt of deserving harm by God, it holds brighter promise for those of us who are feeling guilt about not making the most of Summer with our children.  If the Lord is speaking in various ways, though we do not always recognize it, then we can spend time being more deliberate about paying attention to Him in our challenging Summer months.  We can, in our prayer life, however brief those moments may be, ask that He open our eyes to how He is working in and around us.

Having transitioned my family out of school in a rather stressful way this year, I certainly wasn't seeing a Summer that was starting out as very fruitful.  Yet, I knew that our Father was active, working perfectly despite my weariness and confusion.  As I began leaning in on His power to redeem our vacation days, He faithfully answered my request to see where He was working by showing me the following:
  • Smiles Matter-- Having time off of the usual school year to refill our "smile bank" is replenishing.  Whether it is staying up late to watch a movie or get silly with glasses that have the mustache attached, doing those out-of-the-ordinary little things are a welcome diversion for all of us from the pressures of school.  It doesn't have to be as complicated as we like to make it.  So often, it is the simple occurrences of life that create a lasting, joyful memory.  Be encouraged, as I am, knowing that we are still cooperating with God's perfect season by finding family joy in little things like relishing a meal together or watching lightning bugs in the evening.
  • Skills Develop -- While I watch others running their kids to every practice and game possible, my children are winning at life by learning some basic, necessary skills.  Those of you who have children who are cognitively or emotionally challenged understand what a big deal this is.  My 11 year old Aspie who often behaves like a 5 year old when it comes to responsibility is learning to develop new basic life skills like cooking and cleaning.  My 13 year old is gaining responsibility by doing tasks without me having to ask.  He is better grasping the need for family teamwork when it comes to tending a home.  I don't know about you, but I am finding these essential pieces to adult life much easier to impart to my children when we don't have the demands of homework and more rigid schedules.
  • Social Understanding Grows -- During the school year, the difficult social encounters seem to come flying at me like a driver at 50 miles per hour without a windshield.  With our son, it's having to talk through how much he wants to share with people about his hemophilia or what to do when someone asks why he's in his wheelchair again.  There is more time to emotionally rehearse situations or talk things through when we aren't rushed in the Summer months.  With our Aspie daughter, so many, many social cues are missed.  This Summer has afforded me opportunities to talk her through the nuances of how to correctly plan a play-date, how to let someone know they've hurt us without losing them as a friend, and how to discretely keep certain news to yourself.  Those are some HUGE steps.  The learning is different from academics, but definitely no less important.
While we may not always feel like we are creating measurable results over the Summer months or developing a long portfolio of memorable excursions, we must trust that the God of the unseen is still at work in our lives and our children's lives.  Rest in the assurance that our Creator is fine tuning the important, subtle parts of life over these months in ways that cannot be addressed as effectively during our children's school days.  Our vacation may not include Disney or even a local kids sports team, but there is much that the Lord is redeeming over these months, whether we recognize it or not.

PRAY:  Oh, Father, thank you for reminding me that you work in far more ways than I will ever see or realize!  Let me rest in that knowledge as I try to redefine what a perfect Summer looks like in my own expectations.

Monday, July 8, 2013

SAVING SUMMER: Can This Summer Be Saved?

There is a special time for everything. There is a time for everything that happens under heaven...   He has made everything beautiful in its time. He has put thoughts of the forever in man’s mind, yet man cannot understand the work God has done from the beginning to the end.
~ Ecclesiastes 3:1, 11, NLV ~

When I read Gillian Marchenko's 5 Thoughts About Summer From a Mom Who Fears It a couple of weeks back, I was greatly relieved.  For years I have struggled with the thought that I am a "bad mom" who never seems to create the storybook Summer when my 3 children are home from school in June, July and August.  While other moms are creative with planning days at the beach or the zoo, I am still on edge trying to figure out how to work full-time from my home office while keeping 3 developing individuals from being either computer zombies or slaves to chores all day.  As other kids attend team sports activities, mine wrestle with developing and maintaining friendships over these weeks.  What a comfort it was to know that another mom has Summer battles too, and gets stressed out during that time of year when all of her children are home all day.

In my home this year, things became even more discombobulated by ending the school year with one child having surgeries that resulted in complications, only to have another hospitalized with a serious emergency related to his disorder just as soon as the first one was beginning to heal.  Trying to get our "sea legs" this Summer, with some sort of routine, structure or plan has been virtually impossible.  It has been enough to make me feel very defeated and hopeless about the precious time we are allowed together as a family.

"But You, O Lord, are a shield for me, my glory, and the lifter of my head." (Psalm 3:3, AMP)

 

As so often happens, God lifted my head reminding me that my downward focus at my troubles and my chaos only steals my joy.  Lifting my eyes up to Him, his glory, the work that he is doing in and around me, all result in a heart that is full.

What I have learned is that while Summer may initially seem like a complete flop to me, God can and does still redeem, right here, right now.  He has opened my eyes to the little things, things that are important, that have been going on or that need tending to as we move through the remainder of our "vacation" days.  He has shown me where He is working in my life, my family's life, and how we can unite our souls to Him resulting in a stretch of weeks that don't end up feeling like they were a total waste.  Because God is ever-active in our lives, we need only to step in sync with Him and our time will be fruitful.

Are you feeling defeated or discouraged this Summer from the lack of structure?  Are you overwhelmed as you discover that ESY (extended school year) isn't all it was cracked up to be?  Are these weeks bringing you immense stress rather than joyful family memories?  Then take this journey with me.  

Over the next 2 weeks, let's take a look at saving Summer together.  Let's pause and reflect on what God might be doing, and how we can be making the most of what takes place in its perfect season.  He does make everything beautiful in its time.  We need only to slow down, quiet ourselves, and reflect to perceive it.  When we do so, we will find ourselves with greater satisfaction and deeper contentment as the children head back to school in the Fall.

PRAY:  Father, thank you for making everything beautiful in its time.  My life feels so ugly right now.  Make order out of my chaos.  Redeem my time with my children over these Summer months, all for our good and Your glory.  And help us arrive at the school year with a deeper joy and peace.

Friday, July 5, 2013

SPECIAL NEEDS ETIQUETTE 101: Life Matters

 
You created every part of me;
    you put me together in my mother's womb.
I praise you because you are to be feared;
    all you do is strange and wonderful.
    I know it with all my heart.
When my bones were being formed,
    carefully put together in my mother's womb,
when I was growing there in secret,
    you knew that I was there—
you saw me before I was born.
The days allotted to me
    had all been recorded in your book,
    before any of them ever began.
~ Psalm 139:13-16, GNT ~

I still remember the shocking news like it was yesterday.  It was a sunny Spring day when the boy's soccer team decided to take on the responsibility of moving the goal to the regulation boundary lines.  In a moment's time, the heavy goal toppled forward onto a player who was practice kicking, striking the back of his head and neck, leaving him critically injured.  Our congregation anxiously monitored any updates on the player, who was part of our close-knit church family, as his condition seemed to veer from miraculous life to almost unstoppable death.  Much to our delight and relief, the boy's life was spared, but he faced a long, agonizing road to recovery in his new life with quadriplegia.  

After one difficult visit with the boy's family, I remember hearing the now defrocked, gossip-prone pastor say, "That boy would be much better off if he had just died."  My shock came in hearing such a supposedly faithful leader utter words completely devoid of any faith.  Didn't this young man's life and suffering have purpose and value?  Why would you wish him dead?

Fast forward nearly 2 years later, and my husband and I became the parents of a child who looked as if his future were hopeless.  My own sister-in-law had uttered to me in his first year of life, "Don't expect anyone to feel sorry for you.  You knew hemophilia was a risk, and you just had to have him anyway."  Talk about a sucker punch to the gut!  I sobbed from my toes.  How could such words come from a family member, whom I was expected to get along with peaceably?  Another sister-in-law, who had once been my friend, viewed our angst over our son's fresh diagnosis with disdain.  "It's not like he's going to die from it or anything," she uttered as if it were no big deal.  Those painful words also caused a great chasm in our relationship.  (Ironically, both of these women later ended up having children diagnosed with special needs.)

People can be unbelievably insensitive when it comes to issues of life or death, especially in regards to our children with chronic diagnoses.  In a culture where relationships are disposable and families struggle desperately to stay intact, children are too often treated like just another consumer product or trophy of success.  "Quality of life" morphs into the distorted requirement that life be devoid of all pain or difficulty.  Sadly, we humans then tend to lose all sight of the fact that, not only is this an impossible pursuit, but there is miraculous wonder in every human life on this planet.  Yes, we should offer compassion and comfort to those struggling, yet that should not be our ultimate goal here on earth.  After all, what we face in this life is temporary.  Our relationship with our Maker is eternal.

While previous entries in this series have mostly had separate sections to address the concerns of parents of children with special needs and another to address the typical public at large, my message to both in this entry is the same.  Every life matters.

A life with disability or chronic illness is a life worth living.  Regardless of the level of our cognitive or physical function, we each contribute to society by how we affect and transform those around us.  The "normal" world learns compassion, adaptability, acceptance and to stop taking life's myriad blessings for granted by coming into contact with those who are challenged.  Few people would disagree that a life completely devoid of pain and difficulties tends to result in a tremendously shallow individual.  The truth is that we are far more impoverished without the unique, remarkable touch of those with special needs.  

My own life is much richer because of the different diagnoses my children face.  My sense of humor has been increased exponentially because of the awkward and often weird things we encounter.  I have also likely cried more tears.  My family has met far more fascinating and inspirational people.  There is a depth to my life that wouldn't exist without both my children's hurdles and those challenges encountered by the families we serve.

The next time you feel inclined to shake your head and offer "choice" as an out to those who have discovered their pregnancy may result in a child who faces difficulties, stop yourself.  While families like ours may face many more obstacles than average, our loved ones are "fearfully and wonderfully made" just like those who are ordinary.  God offers purpose and hope for each and every one of us.  (See Jeremiah 29:11)  And this world would be a much darker place without those who have unique abilities.  Again, every family is only 1 emergency room visit away from living with special needs under their own roof.  Live every day for the gift that it is, speaking words of kindness, love, edification, and life into all who are blessed enough to possess it.

PRAY:  Father, life in every form is a rich gift from You.  Help us to treat it as such.  Change our minds and transform our hearts.  Guide us to treat every person we encounter with the dignity you endow.  Thank You for your lovingkindness that is not limited by our abilities.

Wednesday, July 3, 2013

SPECIAL NEEDS ETIQUETTE 101: Holidays

Do not neglect hospitality, because through it some have entertained angels without knowing it.
~ Hebrews 13:2, NET ~

What words would the average person associate with holidays?  Would they use family, food, fun, or celebration to describe such occasions?  Aren't holidays supposed to be full of the stuff that happy memories are made of?  Aren't they meant to be a welcome break from our typical toil and pressure?

These may be the ordinary marks of special occasions, yet sadly, the word most families raising a child with special needs might associate with holidays is stress.  The noise, the lack of structure or routine, the unfamiliar surroundings, and the special food can all create complete havoc for a diagnosed loved one.  Couple that with the inevitable comments and criticism from family or friends, and some families actually dread holidays.

With such diametrically opposed views of special occasions, how do those with a child who has a disability ever reconcile with the extended family's expectations of holiday fun?  The good news is that with some foresight, planning and good etiquette on the part of everyone, an enjoyable time is within reach.

For family extending holiday hospitality:
  1. Be sensitive to your guests of every kind.  Simply stated, treat your guests as you would want to be treated.  If you had a broken leg, you would be grateful for assistance into your host's home and a quick seat where you can relax.  The same may be true of a niece, nephew, cousin or grandchild.  If that child has sensory issues that affect sounds, lights, or food, accommodate him or her with a quiet space in your home where they can go to regroup with their parent with a toy or something else you know they like.  Make sure to serve a favorite food and drink.  Perhaps, ask the parents ahead of the party how you can make the time together the most comfortable.
  2. Change your expectations for that child's participation in the usual activities of the day.  Depending upon ability level, a child may not be able to join in everything you have planned or even stay at the party as long as you would like.  Remember, much of what goes on with someone who has special needs is not visible to the naked eye.  Try to include as much as possible, but be flexible.  Perhaps plan one activity that you know the child with challenges really likes or is especially good at.  Definitely take any mobility issues into account.
  3. Be kind with your words.  The worst thing you could do for yourself and your guests is to make judgmental comments during a holiday visit that is supposed to be happy.  When you cast aspersions on parents and their children with challenges, you make yourself an annoying fool.  They will have no desire to return to your company any time soon.  Realize that there is much you do not understand, and build others up rather than insulting them at a family occasion.
For the parents of a child with remarkable abilities: 
  1. Plan ahead.  You know your child.  You know their limits.  Plan around what you know.  If your child has food sensitivities or special requirements, bring the appropriate food with you or discuss it with the host.  If the noise will be too much, pack ear plugs or noise-cancelling headphones.  If the entire event will be too overstimulating, limit the hours you will be at the gathering.  Get creative in making adaptations.
  2. Grow a spine, rehearse your words, and plan to explain if you must bow out.  Oftentimes, children with special needs do poorly with extreme temperatures.  If the family is planning a holiday celebration outside and the temps are nearing 100 degrees, tell your hostess of this challenge.  It is better to deal with the difficulty head-on than to be miserable and have a scene that escalates at a party.
  3. Expect ignorant comments when you are at a family gathering.  Prepare your mind to be thinking "They don't know what they don't know," if etiquette is breached.  Even if someone is knowingly rude, remember that they are only one emergency room visit away from being you.  And you never know when that might happen.  Two of my more verbally unkind and judgmental sister-in-laws ended up being mothers of special needs children themselves eventually.  Although they would never say it, they would likely feel pretty embarrassed if they had to come face-to-face with those comments today.
  4. Establish your own holiday traditions.  Are the fireworks too unnerving for your child?  Maybe your family wants to watch from a distance where the noise isn't a problem.  Would you prefer to blow bubbles or pinwheels rather than attending a parade?  Make some special time together to do just that.  Whatever you choose, make it your own to make your holidays joyfully memorable.  That will minimize the impact of other family demands you may feel on these occasions.
Whether you are the host or the guest, our best guidance can be found in Colossians 3:12-14 (NIV),  "Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. And over all these virtues put on love, which binds them all together in perfect unity."

PRAY:  Father, you set forth feasts and holidays as times of holy remembering and great rejoicing in Your Word.  Help these occasions to be more special for us than they are stressful.  Grant us all a respite from our daily woes and stress to come together in celebration and relaxation.  Remind us to treat one another as we would wish to be treated.  And leave us with only treasured memories when the holidays are done.