Our Daughter, Joy  

An encouraging story by Steve and Hope Baker that reveals the characteristic grace and sovereignty of God. 

Our Kids Can Do Anything!

by Barbara Lautzenheiser

Yep! Our Kids can do anything! That is what I wrote about the picture of my son Chad,

riding on his bicycle with one hand. That is one of many tricks that he does on his bicycle.

Here is my story.

Psalm 139:13-18

             For Thou didst form my inward parts; Thou didst weave me in my mother's womb.

I will give thanks to Thee, for I am fearfully and wonderfully made;

Wonderful are Thy works, and my soul knows it very well. 

My frame was not hidden from Thee, when I was made in secret,

and skillfully wrought in the depths of the earth. 

Thine eyes have seen my unformed substance;

And in Thy book they were all written,

The days that were ordained for me,

When as yet there were not one of them.

How precious also are Thy thoughts to me, O God! How vast is the sum of them!

If I should count them, they would outnumber the sand. When I awake, I am still with Thee.

 Contrast God's word with the advice our baby doctor had given to Bruce and I upon discovering that my lab results showed a real

good chance of us delivering a baby with D.S.:

1). Lab work is not always reliable and our baby could be born without a handicap.

2). Your baby would have D.S. but support is available and there are families who do not see handicaps as a problem.

3). Abortion - Although we will not perform one (then why mention it).

4). Amniocentesis and\or genetic counseling.

I wondered how much of this medical advice was out of concern for Bruce and I and how much was being given to us to avoid medical malpractice? How can anyone

in a professional practice dare to mention abortion as a solution to

anything? What was the problem here in the first place?

Pregnancy, with all its challenges, should be a time of joy and encouragement in a woman’s life. (Let me hasten to add that I did respect my doctors.) CHASK is a lighthouse of hope across America for every expectant parent who is told the lie about abortion.

I was concerned about the possibility of having a child with a disability.

Regrettably, my concerns were more about my fears about raising a child with a disability than for my child. After two weeks of treading through a full range of emotions, it was time to snap out of the fog. It was time to bring every thought captive to the obedience of Jesus Christ my Savior. It was time to apply the Word of God to yet another chapter in the book of my life. Our conclusion is that every child God gives to me is a gift and reward from Him. Children are perfect gifts coming down from the Father of lights from whom are no variables or shadows of turning. It was time to trust my Savior. My joy was returning.

The wonderful moment had come. I trained myself to have a drug free delivery (if at all possible). The entire birthing floor at the hospital was impressed that I knew my ordinal numbers up to 10. I got my wish and Chad arrived without any complications—-(unless you count the fact that Bruce had broken his foot from being thrown from my horse minutes prior to me experiencing birth pangs).

 So while I was busy counting out loud (wanted to make sure Chad knew his numbers when he arrived...ha, ha) Bruce was in E.R. getting his foot bandaged. He was wheeled into my room just in time for Chad's arrival.

 We should have named him “son of laughter”. Our son was healthy. The doctors were very supportive. Chad had an atrial septal defect that is common with D.S. children that has closed in time.

 I read that 80 to 90% of pregnancies diagnosed with D.S. are terminated through abortion. For anyone who views our children as anything but custom designed by God (perhaps too low functioning to give birth to) let me tell you that God is the one who gives life.  May I  share with you the following?

Chad speaks with reasonable clarity (crystal clear when mad).  He writes and colors notes, cards and pictures.  He is a fluent reader (need I say we love books).  He is learning math. He types wonderfully.  Adores music (sings loud to Jesus).

Athletically he runs track, jumps on a trampoline, races on a hoppy-ball, swings, swims, plays baseball, basketball, rides his bike for miles on the trails, drives a 4-wheeler by himself and horseback rides.

Sounds like a typical boy to me. Chad is now nine. His strength has always been athletics. It is his mom and dad’s strong point, too. He has accomplished some things a whole lot earlier than others but doesn't that sound like everyone?

   Everything has a season to it. I am learning not to force things before my son is ready for it. I think introduction and brevity would fit his learning style the best.

   His older brother Joe (11) has been a tremendous mentor in Chad's life. One of my biggest fears was if Chad would be able to play with Joe. Ahem! Did I actually think that? What a laugh. They are the best of friends. Joe is his hero.

An acquaintance of mine is limiting the size of her family because she said her child was requiring a lot of her time and energy. Please don't limit the size of your family due to having a child with a disability.  Increase it! Chad is blossoming because of his brother and younger sister (Erin 4).

In the early years of Chad's life I became out of balance by putting too much emphasis on his developmental accomplishments, making myself a slave to certain programs I was using at the time.  Regrettably I started viewing my son as a project. I knew something  had to change real quick. I decided to play more with him. Joy was returning.

Bruce and I home educate our children so we had a lot more flexibility in this area. Remember, our children are blessings from God and His load is light. Check yourself on this one.

My special needs boy requires a lot of repetition and patience from his dad and I to accomplish a goal, and the beauty of this is that so do we, especially from our Father in heaven who would have us walk more in the Spirit and less in the flesh.

Speaking of patience, Chad's preferred mode of personality is silliness. Bruce and I recently hauled our children and two neighbor boys with tools back to our woods with our 4-wheeler to cut more walking\riding trails. After two hours of hard work we decided to pack it up and head home (which wasn't exactly close by any stretch of the imagination) for some much needed food and water….O.K… so I should have anticipated the need and packed these in the trailer. One more thing to do; lets just go! Upon returning to the 4-wheeler I noticed our son looking around on the ground. Unsuspecting, I reached for the keys only to find out that a certain young man had taken them and had forgotten where he had hidden them. To make a long story short, we sent Dad home to get the spare key only to return with a wire to hot-wire the ignition. No keys to be had anywhere! Chad had a GREAT TIME!

We have since spent (wish I could say invested) many more hours rootin' around in the woods with rakes and rented metal detectors bound and determined to find that which was lost. I did say our kids can do anything, didn't I? My oldest son has always been quick to remind his parents to always abundantly praise the Lord in situations like these. We have not found the keys-yet! But we know who owns the key to our hearts and we will PRAISE HIM ABUNDANTLY!  

Mommy, Can I worship Jesus too?

Families with Special Needs Children in Church

by Sherry Bushnell

Some of the ideas in this article have been taken from a special book called: That All May Worship, An Interfaith Welcome to People with Disabilities.  It is put out by the National Organization on Disability, www.nod.org   Their slogan is “It’s ability, not disability that counts!”  How true.

 Many of our children have disabilities which are visible.  Others have disabilities which are not so easily noticeable.  Some disabilities are physical or sensory, others are simply mental or psychological.  The majority of disabilities that NATHHAN families deal with are permanent.  We like to tell folks who inquire about our children’s special needs that, “Jordan is normal for Jordan!”

Just as every family has at least one person who requires extra patience, support and understanding, so also in every church fellowship there are people, children or adults, who need extra considerations.  My guess is that already a good seat up front is saved each week for Mrs. Smith, who cannot hear very well.  Mr. James, who has cataracts, has special considerations.  Matthew, who was in a serious logging accident many years ago and is in a wheel chair, also has a spot saved for him. Perhaps your church family is extra tender and supportive of the Banks family with twins, one of whom has Down syndrome.  Life has its many ups and downs, and the love and support given through the body of Christ, is true Christianity.  If you are not in a supportive body of believers, consider hunting until you find one!

O.K.  As a family facing special considerations, here is an interesting suggestion to make yourself feel terrifically involved as a family in the church and to secure your child’s place in the congregation. Look around for other members who have discomforts, disabilities, or handicaps that may have been overlooked. (They may be hiding their problems by infrequent church attendance, or be quietly enduring discomfort.)

Why look for others?  This is the secret of leading our special needs children in worship.  For worship is not something we put on Sunday morning, have a great sing together, and then take off as we leave the door. Worship is how we live our lives, as examples, serving the body of Christ.  Dedicating our daily lives through taking care of others in our own unique capacity is true worship of Jesus Christ. This is our reasonable service of worship. There are others around us who are needing our encouragement.  Be assured that they are just waiting for your family to minister Jesus' love to them.  Without your open eyes, their needs probably will not be met.

With that said, how can we make our church more disability friendly?  How can we help others in the church, who do not know how to meet the needs of the disabled, learn to do this?

              Let’s start with some very basic suggestions, and move forward.

  Although we have all probably had experience dealing with special needs and are comfortable with having someone with us who is disabled, believe it or not, many people simply don’t  know how to act.  Thankfully, people throughout the country are becoming more and more aware that living in America with disability does not mean hiding away or being pushed aside.

 Granted, there is the crowd that goes overboard and insists that huge expense and trouble must be made for the disabled. We feel that this is not helpful for the situation of the family with special needs, but fosters a self-centered attitude.

For instance, a family comes into a church setting with a larger child in a wheel chair.  Their first Sunday, someone must help them up the flight of steps into the chapel.  They appreciate how they are treated and they willingly let others help, thanking them profusely.  This family comes again and again, until they are knitted in heart and lives with the rest.  This family, broken as they are, continues to be a valuable part of the congregation.  They love to be involved in every meeting or service they can be.  Every Sunday, this wheel chair and a 200 pound, adult-sized child is lifted into and out of the chapel.  No one complains, and everyone waits for them to arrive to help them.  After a few months, the church takes a vote and unanimously decides to add a wheel chair ramp to the back door to enable this family to feel even more loved.

The opposite could have also been true.  Suppose this same family arrived and inwardly complained about the absence of a ramp.  They were friendly enough and liked the service, but made a couple of comments, leaving others feeling that they were a little disgruntled because there were not appropriate wheel chair accommodations.  This same congregation had a hard time accepting this family and did not go out of their way to assist them.  Consequently, the seeking-a-church family wandered to the next town, looking for a ramp instead of willing hearts.  In addition, sadly, this particular “disability inexperienced” body of believers felt intimidated and got a sour taste in their mouths for helping those with special needs.

Obviously each congregation will need to decide even those subtle changes that make a positive difference.  A new wheelchair ramp is simply not enough.  The hearts of those looking to receive considerations must already be looking to serve and be a part.  AND those who are looking to make the considerations for the disabled must be willing to share from their resources without a grudge.

 Do we, as a family, take the absence of special considerations personal?  Are we others- focused, or self-focused?  Are we willing to share the work load of our needs (some are quite extra ordinary) for the incredible privilege of being a part of a body of Christ in our community?  Can we “make do” for the sake of others who may not understand or comprehend our needs because they have not experienced them?

Some families are uncomfortable with the very idea of special needs. (The “it’s O.K. for you, but not me” attitude is very common.)  Are we personally offended when our knowledge and experience with disability is questioned or put down?

              I remember in church many years ago, sitting with a lady I did not know who was talking with us about our daughter, Sheela, 3 years old, who was born without eyes.  Sheela had bandages over her eyes to hold in the conformers that were creating a lower eye lid, so we could eventually put in acrylic eyes.  The lady said to me, “Are you sure she is totally blind??? Surely there must be some sight...Look… I can even see her peaking at me through those bandages!” 

Holding back a snicker, I assured her that there was nothing anyone could do to help her see and that she was permanently blind. 

This lady could not handle this concept of “never”.  She actually became offended that I would not accept the idea that Sheela might see some day.

Yikes!  Restraining my arguments for medical impossibility, I smiled and changed the subject.  I chose to overlook and move on.

 How about inappropriate people-first language?  This may be another issue that a family needs to work through.  If older Mrs. Handell walks up to mother of older disabled child and calls her child a cripple, retarded, wheelchair bound, or handicapped, mother has some immediate choices.  She can inwardly groan and then forget about it. She can verbally correct Mrs. Handell right on the spot.  She can look for another opportunity to speak appropriate words regarding her child to Mrs. Handell next week.  Most people are people-first language illiterate.  Not purposefully, but because they have not had the exposure to disability, they just need to learn.  “Politically correct” language is often painted in a bad light. As a result people with  good intentions may decide that trying to word everything “just right” is not worth the effort.  Have a heart.  Just share with them in an appropriate conversation how you view your child and then let it go.  Most likely they have no intention of hurting you.  Overlook it!

Look for ways that you can possibly integrate your special needs child into the church by keeping a sharp eye out for ways to minister.  Sometimes this will be you and your child working together (in the Sunday school setting, washing dishes at share-a-dish meals, cleaning the church house, etc.).  Just having your child, with their limitations, working and serving others will greatly motivate the non-disabled to also serve. (It pricks their conscience!  Hopefully a pastor is sensitive and will actively recruit you and your child to help.)

Once you have located another family or persons who need extra considerations, think about approaching your church body about setting up a committee or meeting anticipating the needs of those with disability and improving the atmosphere and conveniences. Here are some tiny, yet very much appreciated things:

During prayer time, remembering the feelings for those with limited mobility, allow options.  Say, “Standing or seated”, “Kneeling or seated” instead of “Everyone please kneel”.

Here are some ways that ushers can extend a special way of welcome to the disabled.

 Ask about preferred location for seating.  Seat a new person (especially one with disability) near or with someone who is helpful or willing to be congenial.  Too often a family with a special needs child is seated in isolation,  possibly because no one knows how to help.

              Consider transportation:  for many families or the disabled, just getting to church is a major barrier.  Is someone blind, in a wheel chair, or because of mental impairment cannot drive? Just getting a ride Sunday morning may be a problem.

  Do you have a wheel chair lift in your van already? Consider it a ministry to find others in your community that would love to attend, if they could get a lift.  Prearranged parking for those who have a hard time walking is a special consideration that speaks volumes of love.  Also try to make sure that there is space in the parking slot for the lift to operate properly.

Here are some other great ways to help our friends learn to love and appreciate our children with disability.

When you and someone in the church body are conversing and they want to ask a question about your child, directly ask your child, if they can answer.  This reassures the person wishing to welcome you and your child that disability is just a nuisance and not a reason to not personally welcome your child.  One or two people shaking your child’s hand or gently welcoming them makes your child really feel a part.  If you are talking to someone who is hard to understand, don’t pretend to understand speech or the ideas of the person if they are unclear.  Request politely that the person clarify. Continue speaking to the person, rather than asking a companion to answer for them.

If you see another family needing help, offer assistance, but do not impose.  Allow a person to retain as much control as possible. Doing things for him or herself may be very important, even if it takes longer.  This includes the line through the serving counter at a shared meal, walking up to communion, bathroom trips, or even coming in the door.  Ask them the best way to help.  Personal experience makes the disabled person or parent the expert.

Work to control personal reactions of  discomfort when someone behaves in an unexpected way or looks somewhat different.  Try to see the person as Jesus sees them and overlook self stim-behaviors such as rocking, burping, groaning or self-talking noises.  Of course these things are socially unacceptable, but making this special someone feel accepted and a part might just do away with a lot of it.  Some disabled people have interesting ways of saying, “I’m uncomfortable or uneasy here, will you accept me?”

Here are some time tested ways to improve personal interactions with those who are disabled.

If a person has trouble with reality, be simple and truthful. Don’t use social innuendos or slang words.

Are they fearful?  You stay calm and show them there is nothing to fear by your welcoming smile and gracious tone.

If they are insecure, be accepting of them as a person and their hesitant tries at communication or interaction.

If they have trouble concentrating, be brief.  Keep the time to sit still in smaller segments.  Get them up to use the bathroom, or take them for a walk around outside or to the car and back.  Then come sit back down.

 Are they over stimulated or disruptive?    Take the time to seat them appropriately. Ask someone to move if you need to. Stimulating speakers and loud noises can be startling.  Choose a seat away from the speakers and close to  a door, so that exiting quickly is possible.

              Above all, stay positive, don’t argue with them if they display unclear concepts in conversation.  Don’t expect rational discussion.  Enjoy them on their level.

People with developmental disabilities, especially intellectual ones, have often been treated as less than fully human.  Today we are just beginning to understand that those with delays have so much to offer a welcoming congregation.  Just for starters, they may exhibit qualities “that abide” such as faith, hope and love.  They often have a simple, meaningful relationship with God that should be an example to all of us.

It is not fair to assume that a child will “get nothing” from attending services.  Faith is not measured by how fast it develops, or the wisdom that can be spoken.  Nor are we aware of the depth of what any one of us gains from worship.  (After all, how many of us have “wandering thoughts” in worship?)

Our experience has been that God’s love and His Word penetrate the heart, regardless of age, understanding and ability.

Are you wondering where your special needs child is with the Lord?  I know that He loves them very much.  Did He create them to be two years old?  Then I believe He meets them, just like we do, at two years old.  Are they capable of blessing Him?  Absolutely. He created them to be a blessing and to honor and praise Him just as they are.  They are already a jewel He is polishing, perfecting, setting aside for His purpose, just like you and I. 

Regardless of whether others understand the disability of your child in totality, or if they even have a clue what it is like to live with disability day after day, most Christians are honored to be a part of the lives of special needs children.  Opening up to them and allowing them to see us on our good days and in our bad moments will help them to have a glimpse of how we feel and the needs we have. 

Worshiping Jesus in our daily lives by sharing with others around us is all part of what God expects from us.  We should not hide from the body of Christ.  Actually our pain is their gain (and ours, too) as we learn to stretch and minister to the disabled among us.

A couple suggestions:

       *Sitting Still:

Break each part of the service into individual sessions. Music, prayer time, Bible reading, preaching, closing prayer, visiting time, etc… Give child same toy, snack, or book for that part, each Sunday.  This focuses on the immediate instead of the longer hour. Sit next to a door.  Get up for a walk if child (or adult) seems agitated or antsy.

       *Disturbing Noises:

Sit in the very back of the auditorium.  Or better still, in the foyer in chairs or a bench.  People will get used to the noise if it is softer at first and be less disturbed. Keep positive and try not to stress. Sitting in the same spot each Sunday, the same walks, snacks, quiet toys, and interesting quiet activities will calm and reassure our noisy ones.  Some days we just might  need to request a tape of the service!

        *Avoiding loud or over enthusiastic participation:

Practice at home.  Singing together at home, helping our eager singers learn to modulate their voice with others, can be fun! This goes for sitting still, too.  We use Bible time at home for training the positive aspects of participating in a service with others.  Bible time at home should not be “battle time”.

       *Helping our children to pray:

  Teaching our children to vocalize their heart to the Lord is easier if we model this behavior many times ourselves every day. Model folding hands, kneeling, and prayer in the same tone, words and format everyday.  Keep it short.  Encourage vocalization, even if the words do not make sense.  God understands their heart. Use sign language for I love Jesus. Help me to obey, etc...

       *Teaching our children to interact with others in the church setting:

Children need to sit beside us if we cannot trust them not to run around, out of control.  Don’t assume others are watching out for them, unless previously agreed.Model greeting others for them. Ask someone enthusiastic or accepting of the situation  to take the time each week to greet your child in the same way.  This helps our children practice with predictability. No running— No shouting—No whining  ….We can make our children welcome by training at home consistently and using opportunities in public to practice socially acceptable behavior.

 A Mother’s Prayer

 O God, help me now.  My soul is weighed down with this burden.  My heart aches for my child.  Sometimes I wish I could wrap him in  my arms and flee away from the taunts and accusing jeers of thoughtless classmates, away from the pressures of evaluations and examinations.  Envelop us both in your healing arms, dear God, and bind our wounds.  Carry us by faith beyond the pain of these days.  Be our refuge.

Amen.

(Anne Sheppard)