Thursday, January 27, 2011

Shaking My Fist at the Sky

"Even if God kills me, I have hope in him; I will still defend my ways to his face."  (Job 13:15, NCV)

Sometimes life isn't fair.  I'm sure that's no revelation to you.  If you're one of the many parents of kids with special needs who reads these posts, I'm sure you've come face to face with that reality more times than you care to.  There's nothing fair about having a sick or overly-challenged child.  While the rest of the world goes on taking their "normal" lives for granted, you are an up-close witness to chronic heartaches.

In the strong days of life, we can come to a place of acceptance of life's injustice and move on.  We can even find joy in spite of the pain.  However, when the frustration becomes too much, and the journey too long, anger can naturally creep up on us.

Humanity has never quite figured out what to do with that emotion.  Anger scares us.  Being on the receiving end, we shrink, recoil and get defensive.  On the feeling side, we experience a whole host of corresponding emotions that muddy the waters.  Are we entitled to our anger?  Is our anger sinful?  Will the source of the anger ever be resolved?  Did we embarrass ourselves by feeling our anger?  It's a struggle.

And if the One we're angry with is God, an extra layer of complication might be added to the whole situation.  We feel guilty.  After all, this is the Creator of the Universe who could squash us like a bug that we're directing these emotions towards!  It puts pressure on our faith life.  The zeal in our worship may wane.  Hope in this life may fade and the weight of the world overwhelm.

Take heart!  God has plenty to share and encourage us with regarding this complicated emotion.  "My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish?
My God, I cry out by day, but you do not answer, by night, but I find no rest."  (Psalm 22:1-2, NIV)  Do you know who uttered those words?  Besides the psalmist, David, having written them, at least the first verse was uttered by Jesus himself on the cross.  (See Matthew 27:46)  Do you think there's a hint of anger, upset or frustration in those words?  And yet here they were uttered by a Bible great who was considered "a man after God's own heart" and the very Son of God himself!  So even the elect feel abandoned, unanswered and at the end of their rope sometimes!

Proverbs 15:1-2 validates that there will be things that stir up our anger on occasion.  Whether it's a harsh word from a doctor or teacher, lack of communication or relational health with a spouse, or simply the fact that we have to run to the hospital one more time, anger is an appropriate reaction.

However, Psalm 4:4 tells us that we should not commit sin in our anger.  In other words, how we deal with the anger is what can be good or bad.  Of course, we know when we lose our temper, act in a vindictive manner or hold on to a spirit of unforgiveness we're not dealing with the anger well.  But when we flee to God in prayer, sharing our tears and frustration, persisting in seeking His presence in the situation then we're getting it right. 

Realizing that God is big enough yet tender enough to handle our anger is an amazing gift.  We don't need to repress those emotions.  We just have to keep following hard after Him, asking for His help.  And we can be assured that our eternal salvation is not at peril because of struggling through anger with God.  He tells us in Romans 5:6-10 that He loves us so much that He died for us even while we were still sinning against Him, not before we were cleaned up.  Amazing!  In fact, we were His enemies.  I daily struggle with imitating that! 

I don't know what may be causing your anger today.  I myself have had an 18-year unresolved trial that has stirred up some anger towards God in me recently.  But we can keep trying to work it out with God knowing that even if we feel this anguish, there's no One else who is our Hope.

Tuesday, January 18, 2011

The Sandwich Generation

“Stand up in the presence of the elderly, and show respect for the aged. Fear your God. I am the Lord." (Leviticus 19:32, NLT)

If difficulties came in single incidences rather than their typical clusters, life might be more manageable.  I know I am not alone in that thought process!  This, in fact, may be exactly what birthed the saying, "When it rains, it pours."  Life does not happen in a vacuum, and because of that truth, we can often become a stressed mix of ongoing challenges.

Like so many of my peers, I find myself in the mix of "The Sandwich Generation".  What this means is that I'm in the throws of caring for young children while also caring for elderly parents.  The hallmarks of this season of life include running to help parents with things they are no longer capable of while also running to help your own offspring with their many demands.  It can entail mowing your parents lawn and then running your child to little league; driving parents to appointments followed by attending a school program; visiting mom or dad in the hospital and getting home in just enough time to help with homework; cleaning their rain gutters one day and taking the kids clothes shopping the next.  It is a season that can be difficult to treasure.

Attempting to handle this juggling act with grace is surely a challenge for anyone who encounters it.  But add to the mix of this scenario a child with special needs, and insanity surely can't be far behind!  The tug from these different directions and the expectations that accompany can be overwhelming.

Even so, there is hope.  Let me share a few thoughts on managing the sandwich generation with your sanity intact.

For starters, have a talk with your spouse and kids.  Since your first obligation is to them, lay out the situation before them in a way that they will understand.  Explain that everyone will need to pitch in together in order for you to be able to help your parents.  Impress upon them that they need to make you aware of any important dates or deadlines so that you can be there for them.  You may have to ask your spouse to step in on occasion for doctor's appointments or other duties you typically handle.  You may have to ask the children to cooperate with the way your spouse does things versus they way they are accustomed to doing them with you.  While challenging for the family, it may be a great opportunity for each member to grow in responsibility and self-sacrifice.

Speaking with your spouse and children may lead you to examine and clarify your boundaries.  (If you're a regular reader, you KNOW that I love the Boundaries books by Drs. Cloud & Townsend!)  You need to determine how much is too much when it comes to caring for your parents.  You also need to know how much your spouse and children think is too much.  Some people feel comfortable with having elderly parents move in with them, while others are fond of hiring a cleaning lady and meals-on-wheels to help their loves ones.  What will absolutely do you in is the conflict of you wanting to be at your parents' side most of the time while your spouse feels you should be home more.  It can also become a major problem if your parents expect you to be on call for them at all times when you have other priorities with your child.  Living a sizable distrance from you parents may only add to the strain.  It's essential that you work out what your limitations are before it becomes a problem and not after.

Of course, admitting that you can't do it all means that you will have to enlist help in caring for your aging parents.  This in and of itself can become contentious as adult siblings quarrel over who does most of the work and who is most readily available.  Unfortunately, each individual tends to think they're the busiest.  But having a child with special needs can often take you out of the equation.  One remedy might be working through a set schedule or being willing to hire professionals (cleaning service, lawn service, food delivery, medical alert service) if the funds are available.  Also, don't be afraid to ask neighbors, friends or your parents' church to pitch in if your are in need of other alternatives.  In enlisting help, you need to come to a place of acceptance that you can't always be there.

You will need to become flexible in the area of expectations.  Being in this position will require you to put aside your inner perfectionist.  A person cannot do it all and do it well.  Both your parents and your children can be taken care of satisfactorily without everything being flawless.  Remember that it's just a season of life, and it will not last forever.  Also, remember that your parents may not be where they once were mentally or physically.  Letting go of certain things or acceptance of their lot in life may take quite a bit of time.  Don't let it ruin your day if your parents complain that things are done to their liking.  It may be the one piece of their lives that they still feel they have control over.  Offer them compassion rather than succumbing to irritation.

Furthermore, you will have to work with them on their misgivings.  Things can't be as they were 20 or even 10 years ago.  A gentle detailing of the demands on your life may be necessary in order to confront your parents' assumptions regarding your involvement in their care.  You may have to literally spell out in detail what care of your special child involves.  Most grandparents, while loving, have no idea how taxing the average day with a special needs child really is.  And while even the best explanation may not accomplish what you want it to, it's important to let your parents know what they can and cannot expect as far as your involvement.  Once you have done that, move forward in peace, sticking to those boundaries.

All of this being said, do realize that your family of origin may be calling on you because you possess a certain level of expertise in managing medical issues.  This may sound burdensome, but it's really your opportunity to shine.  Because of your experience with your child's special needs, you are competent in deciphering medical language, treatment options, logistics and insurance coverage.  You may be extremely busy with your own children, but you could make a major difference in the quality of your parents' care by sharing that knowledge.  God doesn't give us these life experiences so that we can keep what we gain to ourselves!  (See 2 Corinthians 1:3-4)   When you are able, share your concerns, insights and opinions with both your parents' and your siblings.

Finally, come to a place where you can be resigned to the fact that life is what it is at this phase.  It's not fun on so many different levels.  But sweet moments are still there to be cherished.  Make it your mission to look up from this challenge and find the humorous, heartwarming and memorable times while they are still there.  This will give you the stamina to carry on with the demands at hand, and help you to be left with gratitude that you were able to be there in some way for your parents before they left this earth.

*For more insights on caring for aging loved ones, read Cherish the Days or other books by Martha Evans Sparks.

Monday, January 10, 2011

Anatomy of an ADHD/SPD Baptism


Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”  (Matthew 19:14, NIV)

A parent dreams from day one of their child's life how they would like that child to turn out.  Countless books and resources flood the market to help us steer these kids through everything from sleep to studies to good decision making.  We do everything in our power to be a positive influence on how our children develop, but at some point, their lives and their decisions must become their own.

This can be especially challenging in the area of faith.  I know what I passionately believe, and I want more than anything to be with all three of my children in heaven some day.  Just like God, it is my desire that none of these children be lost.  To that end, I have taught and raised them in our Christian faith not only through church programming, but in homeschooling and in practical teachable moments.

Much to my delight, my two older children came to a decision to invite Christ into their lives at a young age.  They had favorite Bible verses and announced them proudly at their baptisms.  Each of them had come to me and asked me how they could have Jesus live inside their hearts.  After being certain that each of them had grasped exactly what that meant, at their request, I had guided them in "the believer's prayer".  Shortly after that point came their baptisms.  I had full confidence in their decisions and have continued to guide them along the way in the years that have followed.

My youngest daughter, however, has not been such an open-and-shut case.  She came to me like the others did, about a year or so ago, asking the same question, wanting to have Jesus live inside of her.  I guided her to the point of "the believer's prayer".  But despite that prayer, I seriously doubted her conversion.

You see, in case you didn't already know it, our youngest child has a serious case of ADHD that has been unsuccessfully treated due to her severe drug allergies.  She was also recently diagnosed with Sensory Processing Disorder (SPD), being both sensory avoidant and sensory seeking in every area but one of those evaluated.  When you combine a child who is impulsive to the point of her exuberance overriding her ability to reason with one who reacts in unusual ways in order to compensate for senses that don't work the way everyone else's do, you have quite a mess.  What I see on a daily basis is a little girl who is constantly touching others, crying, ever-moving and who delays obedience, if she complies at all.

So when she began hounding me over being baptized, I frankly put her off.  I told her things like, Oh, yeah, we'll have to look into that.  Then when she began hearing at various times of year that our church would be offering upcoming baptisms (because she's so darn intelligent), I began apologizing, saying that I had just forgotten to register her.  Then when she started stomping her feet expressing her feelings of injustice as to why she couldn't get baptized when every other family member had, I got up the courage to tell her the truth.  I explained that before I could move forward with such a faith commitment, I needed to see some "fruit" in her life (ie love, joy, peace, patience, kindness, goodness, self-control).  In other words, I confessed that I hadn't contacted the church because I needed evidence that a conversion really had taken place.  She certainly didn't like my answer, and she never acquiesced in requesting to be baptized every time she knew they were being done at our church.

One day I was talking to my friend, Dr. Steve Grcevich on the phone about another issue.  Since I know he has expertise in the area of ADHD and ministry, I asked him what he had thought about our Sophie continuing to request baptism.  He asked me why I had not allowed her to be baptized up to this point.  And when I explained my reasoning to him, his answer to me cleared every cloud away and opened the path for this eight-and-a-half year old girl to realize her wish.  He opined, "Well, did you start producing fruit the minute you invited Jesus into your life?  If you think she understands what she's doing, then I think you should let her do it!"  It made so much sense, I felt embarrassed.  Here most Christian parents would love to have their child make a commitment of faith, and yet I'm denying my daughter the opportunity.

As I pondered this whole situation further, it broke my heart.  Coming to understand some aspects of both her ADHD and her SPD, I realize there are some behaviors that she just cannot control without much work and retraining.  Can you imagine willing to follow Christ and yet, being unable to keep yourself from some socially unacceptable actions, feeling like the "naughtiest" sinner in the world?  What sadness I felt when the neuropsychologist announced that her testing revealed that she thinks, "I'm a bad kid," "Nobody likes me," and "I don't like myself."  It became apparent to me that she needed that positive experience of baptism and the growing confidence of knowing that no matter how much her disabilities mess with the rest of her life, she is secure in her Savior.  He made her.  He loves her.  She is forgiven through Him.  And He can recycle her difficulties for amazing good.

Two weeks ago, they made that announcement again that they would be offering baptisms on the second Sunday in January.  This time when my eager little girl asked if she could be baptized, I had the joy of telling her "yes".  Her happiness was palpable.  She began planning who she wanted to be there and how we would celebrate.

To their great credit, Crosspoint Community Church, who has supported our ministry since day one, was very open to allowing a little girl with such challenges be baptized.  The Pastor of Spiritual Development, Dan Morse, whom I've known for years, spoke with me by phone before the event to make sure Sophie was ready for this big step.  He listened intently and with good discernment as I explained the whole journey to him.  I was overjoyed when he not only agreed to move forward with her baptism, but also suggested that my husband might join her in the baptismal pool and help baptize his daughter.  Whether he knew it or not, that was a terrific insight!

This definitely wasn't the "typical" baptism that I went through with my other two.  Despite her high level of intelligence, she didn't have a favorite Bible verse that she wished to share, but rather wanted to announce, "I want to be baptized because I love God and I want the whole world to know!"  Fancy, traditional clothes were out of the question with her SPD.  And she was so excited that sitting through the service was virtually impossible as her body needed to move or have strong physical input in order to feel comfortable.  Nevertheless, she has driven her stake in the ground, telling the world where she stands.  And we couldn't be more overflowing with joy that it's on the side of Jesus!

Thursday, January 6, 2011

Creating Order in a Chaotic Life

"God is not a God of disorder but a God of peace." (1 Corinthians 14:33, GWT)

Aside from getting the fitness bug every January, it seems many Americans make the resolution to get more organized.  Whether it's dealing with all the "stuff" of Christmas that becomes less "cozy" and more "cluttered", or scrambling to find everything we'll need to complete our tax returns in the next few months, people suddenly get the urge to purge and tidy otherwise messy lives.  And that's not necessarily a bad thing.

Not to scare you out of your mind, but have you thought of what would happen to your child or children if something happened to you?  Would someone have easy access to all that is needed to care for your offspring in your place?  In a less-than-worst-case scenario, how do you coordinate all the records and communications needed between doctors, therapists, dentists, educators and insurance companies?  And could the daily functioning of your household just run more smoothly if you could easily locate what you need?

The fact is that the better organized we stay with our child's records, the less stressful and more pleasant life will be for all of us.  Here are a couple of ideas to help you along the way:
  1. Whether it be a 3 ringed binder or a system like Information in a Box, having all of your child's important papers in spot will only help you stay on top of the documents needed to acquire the aid and services that would most benefit them.
  2. Adding to any system a "Getting to Know My Child" letter that documents all of your child's likes/dislikes and other idiosyncrasies will assure that someone can carry on doing things just the way your child prefers if you are out of commission for some reason.  It can also be helpful with daycare, babysitting or school as well.
  3. Another fabulous way to stay organized is to maintain a free CaringBridge Website detailing your child's progress.  Aside from the fact that it allows friends and family members to keep current on your child, it can be referred back to for record-keeping purposes.  It is tremendously efficient in that you only need tell the story once in order to spread the word.
  4. Of course, the "Cadillac" of all systems would have to be Parlerai.  This computerized system allows you to coordinate all of your child's care in one centralized web site.
  5. What about planning for transitions?  Lifecare planning has become an entire specialty unto itself these days.  Why not plug into the expertise of people like Gwen Faulkner and her Special Needs Road Maps.  This will help take your child from cradle to grave with proper legal and financial planning set in place.  (See also our October & November, 2009 issues of SNAP SHOTS for a terrific overview!)
  6. Aside from the critical documents, how about organizing your child's items for easy access and ready comfort?  Lorna d'Entremont describes in detail in her blog how to organize a personalized sensory box.  You could adapt this to kids who do not have sensory issues, but who find comfort in the ability to quickly locate their favorite items such as adaptive tools for writing, eating or sleeping.
  7. Merely having a designated bookshelf where you can readily reach for favorite resource books on your child's given area of need, your favorite devotional books that bring encouragement or the best bound directories you use will lessen your stress when a need for that information arises.
The bottom line is that we parents who are caring for children with special needs tend to fly by the seat of our pants more often than not.  We use the demands of our lives to excuse us from getting things well-organized in our homes and our lives in general.  While adaptability is key, continual chaos is not God's will for our lives!  We must be deliberate in making time to sift through things and get them in place for easier access.  It isn't just going to happen on its own.  The further we delay this process, the larger and more anxiety-filled the situation becomes.  When we make that time to tidy things piece by piece, we will find that the God of all comfort brings us peace in a simple way that otherwise never would have occurred to us.

*Need some encouragement along the way?  We LOVE Joan Celebi's OVERWHELMED NO MORE!

*Save money on organization tools & have part of your purchase going to supporting this ministry when you designate SNAPPIN' as you charity of choice at GoodShop.com

Monday, January 3, 2011

MY HOPES FOR THE NEW YEAR

"Let us hold unswervingly to the hope we profess, for he who promised is faithful." (Hebrews 10:23, NIV)

While it's estimated that only 40-45% of Americans make one or more New Year's resolutions, the turning of the annual calendar is intrinsically a time of great hope.  A person can't help but look to the months ahead with promise.  It's like getting a fresh start at life with endless possibilities every 12 months!

As I pondered this time of year, I ruminated on what I'd like to see happen in 2011, especially in regards to this ministry.  For those of you who don't know the SNAPPIN' story, the organization was formed as a result of God's calling, not my personal endeavor.  It is missional rather than vocational.  I truly believe that the Lord has sent me to do the work we do here, and that is what keeps me going.

However, I will admit to you that this is often a very thankless job.  In a culture where people are looking for feel-good causes, largely centered around children, ministering to those who care for the children often goes unsupported.  Aside from working hard to get people outside of the community to catch the vision, donate or volunteer, there is the heavy work of lifting the downtrodden to a place of hope.  Convincing parents that God cares about them and their children, connecting them to resources and training them to become empowered but courteous advocates is no small order!

Even so, if only people could see the tears of joy from the families I connect with when they realize that they're not alone, perhaps they would be as motivated as I am in this high calling of mine.  If people could only see the huge difference small acts of kindness to these families make, maybe they would stop paying lip service, roll up their sleeves to help and end my frustration.  I stilled haven't figured out what it would take for empathy to click on in people's heads, imagining if they were in a similar position with a challenged child, unable to attend church, feeling isolated.  If the church could only see how much fun and how close to the glory of God including these families in every aspect of their programming is, perhaps scoffers would begin thinking that we actually believe what we say.

What are my hopes for the new year?  My eager wish is that people would talk less and serve more, realizing we're ALL busy, but many hands make light work.  I'd like to see people put their money where their mouths are.  Fewer platitudes and more donations would prove that believers actually understand that they are only stewards of the good gifts God grants them.  It would be terrific to have more parents spreading the word that there's help out there and that the Lord is sending His love to them in very tangible ways, adding to our numbers and ending the isolation of even more parents.  How amazing it would be if this year churches actually started getting over their discomfort and sought out para-church ministries like ours to learn how they can be doing more to include kids with special needs and their families! 

There are more dreams that God has placed on my heart that I cherish.  They are big dreams, hopes of larger national influence and working shoulder to shoulder with others as we laugh and cry in the mission of transforming minds.  But those larger visions will never come to fruition until both the church and the "tolerant" public actually live what they spout off about, understanding that each human person deserves encouragement, respect and compassion.  May God bless us all with forward movement in this area in 2011!