Tuesday, May 24, 2011

The Right Kind of Role Model


And you should imitate me, just as I imitate Christ. (1 Corinthians 11:1, NLT)

The context of modelling behavior for our children reaches a completely different level for those of us living with a child who has special needs.  Various diagnoses require the role playing of behaviors the rest of the world would take for granted with their children.  Children on the autism spectrum, those with cognitive delays or those lacking any sort of social skills can find help in both social stories and role playing.  In fact there are even good resources out there for parents to link into for such work with kids.

A recent situation with my daughter who has social deficits truly impressed upon me the importance and urgency of this work in new ways.  Our family has the privilege of owning a trailer on a seasonal site at a wonderful campground and resort about 2 hours away from our home.  We all love to go there to refresh ourselves and enjoy some family time together. Basketball being one of our daughter's favorite sports, she asked to go play at the court which is the equivalent of perhaps one block away from our site.  We joyfully and comfortably allowed her to go without an escort as this is a safe, gated community. However, when my husband went to call her home for the evening, he was notified by some other children there that she had left with another little girl and her father.  As dark was quickly falling, my husband frantically searched for her around the grounds.  More than once he returned to our site panicked, wondering if she had returned on her own.  Eventually, she did come back, ear-to-ear smiles about the new friend she had made.

It was clear to me that she had some learning to do.  I sternly, but lovingly took her into my lap and impressed upon her how inappropriate it was to leave with someone we don't know, especially without telling her parents first.  Over and over we rehearsed what her address is and what she should do in a situation similar to that one in the future.  The next morning, when she wanted to take off to be with her new-found friend, we role played together.  She told me her address.  I extended invitations, and she responded in socially appropriate ways, setting boundaries around what was and wasn't okay.  I felt confident in allowing her to go, but I also checked in with the father of the girl she had made friends with.  He was very nice, apologetic, and now, informed.  We chatted about our girls and built a comfort in looking out for one another's children.

Now if all of this can occur so easily and commonly in the physical realm, what do we suppose happens in the spiritual realm?  God gravely warns us in 1 Peter 5:8, "Be alert and of sober mind.  Your enemy the devil prowls around like a roaring lion looking for someone to devour."  Shouldn't this call us as parents to be role-playing with our kids on matters of eternal value as well?  If we're that worried about a human running off with our child's physical body, shouldn't we also be equally if not more concerned about someone running off with their souls?

Take note of a few things in the story of my daughter's wandering.  First, we talked about what is appropriate.  God calls us to do no less with His word.  "Place these words on your hearts. Get them deep inside you. Tie them on your hands and foreheads as a reminder. Teach them to your children. Talk about them wherever you are, sitting at home or walking in the street; talk about them from the time you get up in the morning until you fall into bed at night. Inscribe them on the doorposts and gates of your cities so that you'll live a long time, and your children with you, on the soil that God promised to give your ancestors for as long as there is a sky over the Earth."  (Deuteronomy 11:18-21, MSG)  All of us are prone to selfishness and sin unless we are taught what is appropriate in the sight of the Lord.  And we are so fortunate to be living in an age where there are countless varieties of children's Bibles and related tools to share with them.  We should not let a day go by without making our children aware of what is appropriate.

Second in our handling of her "elopement" (as it is known in the special needs community), repetition was key.  How do we have God's word written on our hearts if we don't repeatedly read it, write it, listen to it?  Are you aware that the more senses you appeal to, the more likely something is to be retained?  Therefore, sharing the Lord's expectations for us, what is acceptable and what is good in His sight, should be frequently shared in a variety of situations throughout daily life with our kids.  This makes a lasting impression.

But the most lasting impression made is in the third notable from the story of our daughter - modelling.  Rehearsing, acting out of those godly behaviors really sticks with our children.  My friend Margo reminds me that faith is more often caught than taught.  And the way they catch it is by watching us practice it as well as practicing it themselves.  I can assure you that my kids readily remember major flubs I made when they were very young.  They also retain things that we did in the light of Christ while they're watching.  With us as their safe haven, it's the most comfortable place for them to try out their wings.  We can also help them refine their behavior.

Finally, as in the story of my daughter, connect with other parents.  None of us is an island.  We need the support and cooperation of others who are in the same situation we are in.  We need to determine if these relationships are going to build up or tear down what the Father has us teaching at home.  We need someone who will report to us how our child is doing when they're out of our sight, so we know if progress is being made.

All of this work is most worthy in building up our children as our godly legacy.  And when we invest our time and energy in such pursuits, we prove ourselves to be the right kind of role model.

Wednesday, May 18, 2011

PLAYING THE DISABILITY CARD





Search me, God, and know my heart; test me and know my anxious thoughts.  See if there is any offensive way in me, and lead me in the way everlasting.  (Psalm 139:23-24, NIV)



I admit it.  There are times when our kids' special needs are useful, and there are times when they are not.  We want our kids to live a full, productive, happy life like anyone else.  And yet, there are times when we could take advantage of some aid or would like some perks that we joke about "playing the hemophilia card".  Crass, to be sure, but common.


It's ironic.  We spend from little on trying to assimilate our kids into the general population.  We strive desperately for inclusion.  We pour ourselves into teaching them life skills, appropriate behaviors, responsibility, persistence and triumphing over their challenges with a positive outlook.  But then we see an opportunity to acquire some free tchotchkes or perks on flights or at restaurants, and our child's disability suddenly appears front-and-center.  We teach them the eternal vision of heaven, but then try to enforce equity through an attitude of entitlement here on earth.


Am I making you uncomfortable?  Is this conversation taboo?  That is not the point of it.


You see, I think that we need to come to terms with the fact that our children with special needs are different.  We need to grieve appropriately, but then realize those differences are merely tools in the hands of a faithful God.  Yes, they have feelings, emotions, abilities and goals just like every other child.  But we need to accept their differences and adjust accordingly.  Then we need to surrender to using these challenges to glorify our Maker in every way possible.


In addition, we need to deeply examine our own consciences before God when it comes to making accommodations or receiving assistance for those children.  I've had other parents tell me, "Go ahead and take the aid!  You're who it's meant for!"  But what if I can afford to send my own child to camp?  Shouldn't I rightly pay my share and leave that money for a family who more desperately needs it?  Do I really need to go to the front of the line at the amusement park or do I merely feel I'm entitled?  When I am not humble in such matters, I give those who are truly in need a bad name.


Controversial and weighty, this query cannot be solved in one brief blog post.  These are questions we continually need to be searching out in our own hearts and minds.  We can only come to the ultimate truth if we make daily time to spend in God's Word.  When we do so, not only do we learn what the Lord expects of us, but we are blessed by the only book that reads us as we read it!  Spend some time reflecting on this today, and use it to help make you the kind of special need parent that God intended you to be.

Tuesday, May 10, 2011

Celebrations!

For of Him and through Him and to Him are all things, to whom be glory forever. Amen. (Romans 11:36, NKJV)

There are times in our lives when, despite life's challenges, our hearts can feel so full they might explode.  May has produced one such month for me.  Besides delighting in my daughter's ninth birthday, there is Mother's Day, and later my own birthday followed by Memorial Day.  It seems we spend this stretch moving from one celebration to another.

It occurred to me the other day how much God created times like this for our souls.  Celebrations produce many valuable things besides the obvious surface enjoyment.

Celebration creates a time to pause.  We stop the treadmill of our ordinary days to denote more remarkable ones.  For just a little while the daily demands and challenges have to wait because we have something much more exciting to do.  There's time to eat cake...  and to receive flowers  ...and to just relax in laughter together.  Where would we find ourselves without such breaks!  It refreshes the soul and brightens our spirits.

Celebration brings a time to reflect.  When my daughter's birthday arrived, I couldn't help but look back on the past 9 years.  My pregnancy with her was a very difficult one, resulting in bed rest for the last 4 months.  She was a little imp who always presented challenges for me.  But I look at how God brought us through so many difficult days, comforting us with a diagnosis and plans for help.  I marvel in amazement when I see how far the school staff has brought her.  I'm thrilled that I can even have some enjoyable time with just the two of us alone as she begins interacting appropriately.  And at Mother's Day I pondered the experience of being triply blessed.  How could my heart be anything but filled to overflowing with gratitude?

Celebration does induce gratitude.  These special times do cause rejoicing which we would not experience but by the hand of a generous and loving Lord.  Whether it be in remembering those who served in the military, a birthday, a founding of a nation, a time together as a church family or any other occasion, the utter fullness of so many good things that God has for us is front and center.  The blessings of having reached a goal or landmark, of good food, of family and friends are all there to relish.  Why should we get to enjoy such things when there are so many suffering in persecution or oppression around the world?  Yet, here are these times to treasure up in our hearts.  How can we not give God all the thanks and see how glorified He is by such events?

Celebration is one way we are used to glorify God.  As I've said in the past, "Whether you are aware of it or not, people are watching you."  When others see you filled with joy and having fun in spite of the difficulties in your life, they are naturally attracted to you.  They want to know what's different about you.  They want to know how you do it.  Celebration is evidence of God's fingerprints all over your life!  It gives you the opportunity to share an amazing Father with people around you.  At our special occasions, others who do not have a personal relationship with their Creator get a chance to enter in to the prayers we pray aloud.  At Christmas, we send a letter with our cards detailing what God has done in our lives over the past year.  So many have seen through these things our son defying the odds with his health, our daughter defying the odds with her accomplishments, and the rest of us defying the odds with our cohesiveness (imperfect as it may be) as a family.  We carry the Gospel in very practical ways to the average person.  How truly amazing to be used by the Lord of the Universe in such ways!

No matter how heavy life is today, make sure you take time for those celebrations your Heavenly Father has placed in your life.  Enjoy them to their fullest.  And grant them the opportunity to accomplish all God meant them to in your life and the lives of all around you.  They go far beyond a mere party!

Tuesday, May 3, 2011

Mentioning Mark

"Encourage each other every day while you have the opportunity. If you do this, none of you will be deceived by sin and become stubborn."  (Hebrews 3:13, GWT)

Some days working in a community of those who parent children with special needs is a discouraging one.  Don't get me wrong.  This isn't meant to be a pity party.  But all too often I feel lost.  I lack direction.  And I wonder what the heck I'm doing. 

It's easy for me to question whether or not the work of this organization is making a difference in people's lives.  The size of the mission field is so incomprehensibly huge.  Too few churches really offer the practical and spiritual love of Christ to families who have a child with special needs.  Still, if ever there was a group of people in desperate need of that eternal hope, it's them.

And too many families take the path of least resistance rather than choosing to do the right thing in any given situation.  Schools resist giving needed, required services.  Doctors act as if they know better than parents what is best for a child.  Outsiders gossip and critique on how a mother or father is doing with their child rearing.  So worn out couples give up or give full-vent to their anger instead of pressing on to be the example God calls them to be.

Given all of these facts, I so often think I want to throw in the towel and walk away from this type of ministry.  But then God shows me in small ways He is doing big work in people's lives.  A brief mention in my pastor's sermon did that for me this past weekend.

I'm unsure now of how the story came about, but the pastor mentioned that during this same sermon the evening before, a young adult with severe disabilities had caused a stir resisting his father.  The young man, named Mark, who is belted to a walker came charging out of his seat and down the aisle to stand right in front of the pastor.  "What can we do for you, Mark?" he asked.  "I just love my Savior Jesus," Mark replied.  The pastor not only choked up in sharing this story with the congregation, but he got me crying too.

You see, Mark has survived brain cancer at a young age.  He has had several surgeries and bears the scars to prove it.  In addition to his walker, he requires hearing aids and glasses, and has little hair atop his head.  He is cognitively impaired.  And despite his challenges, his physical strength is absolutely remarkable.

Mark started attending church a number of years ago when I met him and his mom at camp.  She was so sad and weary.  And they were having no success at finding a church home that would offer them the love and acceptance that they so deeply desired.  So I encouraged them to come give our church a try.  After all, we had just built a lovely new building that was fully accessible and had seating carved out right in the middle, so a guy like Mark could sit amidst the other worshipers.  They've been there ever since.  His mom participates in the choir.  And his dad is frequently there as a greeter at the door just waiting to shake your hand and tease you.  His younger brother has found a home with the wonderful youth group we have as well.  They are a part of our church family.

"See, you do make a difference!  You had your part in Mark and his family being here.  Just keep going!" were the words I heard God shouting to me when our pastor shared that story.  I melted into tears.  Isn't that just like our God, drawing people to Himself one life at a time?  He's numbered every hair on our heads, even if we've lost most of it to cancer treatment!  He cares deeply for each life He's created.  And all He requires of us is to do the same.

Sometimes we get so weighed down by the hugeness of life's challenges that we forget the Father just wants us to do the little things that make a big difference to another human soul.  If we each do our own small part to love another person, it glorifies God.  And in turn, that person does the same for the next person in need.  My pastor's part was unwittingly sharing a story that encouraged me deeply on Sunday.  Surely, if I'm persistently obedient in what God's telling me to do, I'll be doing the same thing for others.