“Open your mouth for those who cannot speak, for the rights of all the unfortunate.  Open your mouth; judge righteously, and defend the rights of the afflicted and the needy.”  Proverbs 31:8-9

In the midst of the worldwide orphan crisis, God is calling His people to act.  Specifically, we believe God is calling His church to action on behalf of orphans with special needs, or intellectual disabilities, who are currently receiving little to no care across the world.  Join us, Special Hope Network, as we speak, worship, and pray on behalf of these ones who have been created so uniquely in the image of God, but have been forgotten by His people.

We would like to invite individuals and families from your church to be a part of this event on March 25th, from 7-9 PM.  “Open Your Mouth“ will be a night dedicated to worship and advocacy in defense of orphans with intellectual disabilities.  Come join us at The Haven at First and Market, where Alex Mejias (local worship leader and musician) will be leading worship, and where we will share with you the heart God has given us for orphans with intellectual disabilities as we speak and pray in their defense.

Kathleen Parker’s editorial piece was entitled “Trig and political calculus”, the Trig in the title not referring to trigonometry, but referring to Sarah and Todd Palin’s son who has Down syndrome. The purpose of her article centered on the fine balance between privacy, and exploitation of her child while bringing the defense of people with special needs to the forefront when politics goes anywhere near the topic. I was unaware of the comments made by Rahm Emanuel, White House Chief of Staff, President Obama, and Rush Limbaugh on the subjects of special needs, using the word “retard”, and making distasteful jokes at the expense of folks who have special needs in the last month (some comments even stretched back to last summer).

In the Outlook section, Christopher M. Fairman wrote an article called “Saying it is hurtful. Banning it is worse.” The whole article is about using the word “retard”, and whether using this word is ever alright to use, though what the cost of banning it would be (as well as how fruitless it would be, since we’ll just find another pejorative term). It is odd to think that a word that originally was used to, as Fairman puts it well ” to convey greater dignity and respect than previous labels had. While the verb “retard” – meaning to delay or hinder – has roots in the 15th century, its use in reference to mental development didn’t occur until the late 19th and early 20th centuries, when medical texts began to describe children with “retarded mental development”, “retarded children” and “mentally retarded patients.” By the 1960’s, “mental retardation” became the preferred medical term, gradually replacing previous diagnostic standards such as “idiot”, “imbecile” and “moron” – terms that had come to carry perjorative connotations.” He goes on to say that “it is only in the past generation that the medical term turned into the slang “retard” and gained power as an insult.” What makes particular sense to me is how word use changes over time, that ” invariably, negative connotations materialize around whatever new word is used: “idiot” becomes an insult and gives way to “retardation” which in turn suffers the same fate, leading to “intellectual disability.” While there may be another word to use, a negative connotation eventually is found.”

Isn’t it sad, that we as human race of people, created by God, are so disparaging to those weaker than us, those who our words hurt, and those who cannot speak for themselves? Isn’t it sad that instead of using words as God intended, we prove ourselves quite dexterous in finding new and hurtful ways to use our words?

There is a movement to remove the word “retard” from use entirely. What word will be next? Wouldn’t it be better if we could be kind with whatever words we are using, to the point that our speech would be wise, seasoned with grace, encouraging, building others up according to THEIR need, that it may benefit those who listen? That is the goal of our life, and hopefully a goal for you, too. Ephesians holds good counsel for us, as we live surrounded by an assortment of other people, both bright and not so bright, creative and non-creative, sporty and clumsy, quiet and loud, financially-wise, and not so great with money, color-blind, and great at interior decorating, musical, and non-musical. We are all so different with strengths and weaknesses, it seems that we could put our time to better use if we each spent time caring for others, encouraging their strengths, and closing our mouths when we feel disparagement, sarcasm or tearing-down in the name of building ourselves up.

Let’s hear that one helpful phrase again, to ring in our ears as we go: Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you. Oh, that we each could do that, today!

“How lovely is Your dwelling place,
oh Lord Almighty
My soul longs and even faints for You.

One thing I ask and I would seek,

to see Your beauty

To find you in the place Your glory dwells.”

Though the song pulls lines from different psalms of David, the idea is consistent- there is beauty and glory to be found in the dwelling place of the Lord.  No wonder we claim it would be better to spend a day there than a thousand elsewhere- it sounds like a delightful place to be.

The church is again and again called by Scripture to keep our minds fixed on the eternity we will spend in the presence of the beautifully glorious Lord Almighty, and so songs like this one and the psalms of David are helpful in directing our hearts towards that end.

But what about God’s dwelling place here on earth?  What does the Word have to say about the place God chooses to dwell here in the earthly, temporal realm?

“A father to the fatherless, and a protector of the widow is God in His holy habitation.” Psalm 68:5

There is a long list of verses that agree with this one- that God consistently chooses His dwelling place to be with those who are weak and afflicted.  Jesus, Himself, is clear about this in Matthew chapter 25-

“Come you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world: for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took me in; I was naked and you clothed Me; I was sick and you visited Me; I was in prison and you came to Me.”

Then the righteous will answer Him, saying, “Lord when did we see You hungry and feed You, or thirsty and give You drink?  When did we see You a stranger and take You in, or naked and clothe You?  Or when did we see You sick, or in prison and come to You?”

And the King will answer and say to them “Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me.”

Here, Jesus does not simply claim to dwell with the hungry, thirsty, strange, naked, sick, and imprisoned- He claims to BE them.  In this passage, God’s chosen dwelling place on this earth is made very clear- the adjectives used to describe it, however, are not as lovely-sounding.  I’m not sure my heart and flesh would so easily long for such a place, and I really don’t know that I would choose to spend a day in any of those circumstances.  Certainly not when my current dwelling place allows me to be satiated, familiar, clothed, healthy, and free.

But what if those places are really where the beauty and glory of the Lord is to be found?  What if God actually does choose the weak things of the world as His dwelling place?  What would it mean for little guys like this one…

He has been labeled by the world as worthless- so much so that they have placed him in a brick holding room, where he is never permitted to leave.  He has AIDS and an intellectual disability, and is passed small amounts of food through the hole from which this picture was taken.  I bet he is indeed hungry and thirsty, feeling naked and like a stranger, is very sick and certainly imprisoned.  So what if our responsibility to him is actually the same as our responsibility to Him?  What if we actually have to stand before Jesus one day and explain why we left Him sitting in His lonely (and not so lovely, according to the world) dwelling place?  Will we ever get to enjoy the Lord in His heavenly dwelling place if we choose not to join Him in His earthly dwelling place of suffering?

In order that we might not be the ones to whom Jesus says “Depart from Me, you cursed, into the everlasting fire prepared for the devil and his angels,” (Matt 25:41) may He give us grace to pray as David did and to continue to sing this song, but perhaps, with a new understanding of that which we are asking.  May our eyes be opened, and then fixed, to the beauty and glory of God that is so uniquely displayed in orphans with intellectual disabilities.

And, so it is with a switch, which is more like a shift in language referencing people who have a cognitive delay.  In the US, special needs is the term most commonly used to reference a person who has cognitive delays, but since special needs can also mean a physical or medical need, oftentimes one has to go on in the explanation past just the description “special needs” to encompass the type of disability a person or people group defined has.  So, around the world, the more acceptable term used for folks who have a developmental delay is “intellectual disability”.  Because we work with folks from all around the world, we want to be clear in who we are ministering to and with.  We specifically work with and serve people who have a developmental delay, a cognitive delay, which we define with the worldwide term, intellectual disability.

What’s in a name?  We think quite a bit.

Over the past 15 years, we have noticed a familiar pattern occurring when people initially meet our children.  They usually respond with questions, perhaps some concerns, and a typically fair amount of awkwardness.  It could be the way Mollie starts to immediately regale you with the last 20 meals she has enjoyed, all while only communicating by whispering and signing, or perhaps it is Samuel telling you with unsolicited detail about his many ailments, with the names and birthdays of each doctor who is working on ‘fixing’ him.  Or it could be the way Maggie will unceremoniously drag you out of your chair promptly at the end of church so that she may put the chairs away and the world again can be restored to order and she can get on to lunch!

To be certain, for the faint of heart, their wonderful oddities can certainly be off-putting, however, for those who are willing to brave their gauntlet and learn the wonderful subtleties and sensitivities of each, they will inevitably find in them a treasure quite rare.

Sam  genuinely believes every woman he has ever met is beautiful and will unbegrudgingly (and indeed unceasingly) declare it to them, until even those perhaps unaccustomed to such approbations will blush at the enjoyment of what must be the truth of it!  Not surprisingly then, he has as of this moment four young women who each claim he is their betrothed, and one has been waiting since Sam was four years of age, and she still has four to go, since he is only 14!

A simple walk through the local mall with our girls will give you a glimpse of what it must be like to be in the entourage of rock stars, since every 10-15 feet some teenager is yelling, “It’s Maggie” , “It’s Mollie!” or the more frequent, “look, it’s The Twins!”.  Like those accustomed to fame, the girls rarely take notice, however on occasion they will grant favor on their admirers by wishing them, “good game!”

But for those who are privileged and it is indeed a priviledge, to really get to know them, they count their relationship to Maggie, Mollie and Sam as one of the most important and satisfying in their lives.  And not without reason, for in them they find no guile, no pretense, and each of them exhibits a decided lack of awareness of all those weaknesses that you and I find so painfully blatent in ourselves.  To be with them is like getting to take a vacation from yourself!  There’s a coloquialism that asserts, “No matter where you go, there you are”, well, not when you are with our children, apparently the normal rules of physics seemed to be suspended.  Without hesitation or fear of my accustomed dramatic exxageration, I can freely declare that my happiest and the most gloriously un-self-absorbed times of my life have been while in relationship to a person with an intellectual disability.

But perhaps this should not surprise us.  Perhaps this is part of the inscrutable gift our gracious God has intended by creating some of us with intellectual disabilities, it is the gift of self-forgetfulness.  A gift Jesus speaks of when he declared to his disciples that there was “no greater love than this, that a man lay down his life for his friends.”  Self-forgetfulness.  Jesus of course was speaking of himself, the one of whom we are told, “for the joy set before him he endured the cross” and “did not consider equality with God something to be held on to, but humbled himself, taking on the very nature of a servant…”  Self-forgetfulness.

The problem, and too few seem to even realize it, is that you can not pursue your own agenda, and anothers,  you can not choose your future and theirs,  your life and their life.  We all choose at some point whose life we will forget; ours or theirs.

So who are you forgetting?

Hello Special Hope blog readers!  My name is Beth Bailey and I am an appointed missionary with SHN, and currently serving as Director of Operations Africa.  I am so excited to share with you bits and pieces of my story (or should I say God’s story in and through me)!  I’ll spare you a lot of the background details, and jump right into how I came to be a part of this ministry.

At the start of this fall, something began to stir in me. What I thought was a simple case of transitioning-out-of-college blues proved to be something deeper- a profound sense of restlessness. It wasn’t that I didn’t love all that I was doing, for I really did and still do. I simply started to feel like the life I was living wasn’t actually the one I was “meant” to live. And so I began asking the questions that people my age sometimes ask themselves- what am I doing with my life, what am I passionate about, how am I to accomplish my dreams, etc. I had no idea that as I began to ask these questions, I would come across an answer that would compel everything to change…

Many of you who know our kids know how much they love to go out and shop, and eat out, and go to hotels, pump gas, walk on our outside downtown mall or long outside shopping center, and just be in public. They love all the things to look at, the music, even the smells.  They love to dance at the store at the mall that booms the loud music out the doors. They love to pay the money to the person at the cash register.  There are days, though, where the interaction of the general public we meet is so discouraging that it makes me want to protect our kids from the unkind reactions, and just stay home all the time.

I’m struggling with imagining now how hard it could be when I am a Mom in Zambia, where it is widely accepted that it is a curse or a sign of your own bad moral conduct  to have a child who has special needs.  So, will our participation in community life  attract more attention, more comments than here?  I live in free speech, forward-thinking America, where, supposedly, children who have intellectual disabilities are a welcome part of society, and I have a hard time going out in public.  How much more challenging will it be for us then to be in a society where children who have intellectual disabilities are rarely ever seen in public, and therefore may not be seen as welcome additions.  Can you imagine what the noises of our family will sound like then?  What will our children reveal in the minds and hearts of the people of our new home?  And what will my responses to their responses reveal about me?

I know, and am convinced, that God’s plan for us is to go to a new continent to care for orphans with intellectual disabilities. But that doesn’t make the preparation any quicker, or any easier! I find myself thinking, quite often, that if God calls us, wouldn’t it be great if he would also do the fixing up of the house for selling, packing of stuff, figuring out what needs to stay and what needs to go, and finding all the health care needs our family has, as well as the myriad other details we need to do each day? I’m sure I will look back on this time as good preparation, and solidification of God’s call on our lives, but right now, while we are in the middle of it, the overwhelmingness of each day is off the charts.

I am so thankful that in God’s good providence, He has provided people to encourage us, help us organize, clean, fix plumbing, help us with computers, counsel, address letters, and many other small items that stack up into a Seuss-like picture of a Wuzzle, Nuzzle, or Kafluzzle with 26 appendages all holding up a spinning plate. Those folks who are doing one little detail certainly feel like God’s grace to us as they remove one plate, and take it home with them! I look forward to the day when I have no more American plates left to spin, and the African ones start. I can’t imagine this could be true, but I have heard that African plates spin much slower than American ones, and at this moment, that is a joy-filled thought.

I look forward longingly to the time when we are actually walking on African soil, ministering to a parent who needs encouragement, or training orphanage workers who will begin to love and care for children who otherwise would have no attention, food, or a home. At that point, I do not think the seas will be any calmer, or make my head spin a any less. I have no false illusions, after living my life to this point, with all God has allowed and brought into my life to love me, grow me, and always remind me that He is God and there is no other, that the sea will be calm and storm-free. But, I am convinced that, if God is calling me, there is no safer place for me to be than on the swells.
“Sometimes he calms the storm with a whispered ‘peace be still’,
He can settle any sea, but it doesn’t mean He will,
Sometimes He holds us close and lets the wind and waves go wild,
Sometimes He calms the storm and other times He calms His child.”

It does seem to make all the difference when you do know “what kind of man is this, that even the wind and the waves obey him”!

Holly

*Worship song by Scott Krippayne,  Sometimes He Calms the Storm.

She stood to look at me, and immediately I recognized those perfectly proportioned slightly diminutive features, and beautiful almond-shaped eyes of someone who has Down syndrome.  She was wearing what appeared to be a man’s large white oxford buttondown shirt with no sleeves.  After looking at me for a moment or two, her features became surprised and she ran quickly into the house and slid the makeshift door closed.  The village orphan worker chuckled and tried to say carefully, ” I am not sure she has seen many…” and then he paused, perhaps not quite sure how he should finish the sentence, so I pointed to my ballcap and said “Red Sox fans?”, and he said, “something like that!”, and laughed.

But even before we could get to the door and call out our presence, the door was being slid open, and out stepped a woman who was wearing what looked to be the exact same outfit we had seen on the girl only moments before – the well-worn sleeveless white man’s buttondown shirt!  She was pulling gently behind her the girl we had seen outside the door, who was now dressed in a beautiful short-sleeved blue dress with ruffles and pleats around the skirt.  Her face, hands, and feet had also all been wiped clean (and all within the time it took us to walk the the forty or fifty feet to their door!), so, it may be that Africans don’t recognize dirt, but evidently mothers still do!

We said our introductions, and asked if we could sit for a moment.  “I work with children who are special, like yours, and I’d like to ask you some questions.” She was cautious about her response, but agreed, and went inside to bring out two makeshift chairs.  Since she appeared a little suspicious (perhaps… she was NOT a Red Sox fan?), I pulled out the picture of my family as I had now done repeatedly and had always noticed an immediate easing of tensions and increasing of openness once they saw I was a father of three adoptive children with intellectual disabilities.  On this occasion, however, it seemed to produce the opposite effect.  She gripped the picture with two hands, then began to look carefully from the picture of my girls to her own daughter, back and forth, back and forth, until tears welled up in her eyes.

Being a man not peculiarly perceptive when it comes to emotions (is that statement redundant?), I forged ahead with my questions hoping that conversation would somehow distract her from whatever painful feelings the picture had produced.  So began my interview, a series of rapid-fire questions beginning with her health during pregnancy, childbirth, developmental milestones, etc.  The purpose of each is to help give me both an overarching picture of her daughter’s development but also help identify any potential concerns or red flags.  At some point in the interview, however, I finally lifted my eyes from my clipboard, where I was furiously writing her responses, and I saw the anguish on this mother’s face, and her tears that could no longer be held back.

Before I could even ask what was so troubling her, she blurted out a question, half speech/ half sob and completely disconnected from anything we had just been discussing, “How fast can your children read?!“  I was so taken aback by this emotionally packed nonsequitor that I think I simply looked down meaningfully and mumbled something intentionally incoherent (I’ve not been married 20 years for nothing!).

Quieter, but still in between sobs she confessed, “my daughter reads slowly, much slower than other children…  I think it’s my fault.” The picture was getting clearer. I asked, timidly, “what does she read?” And her sobs halted long enough for her to look up at at me with a face that showed she thought my question was utterly ridiculous (I have always been amazed that all the women I have ever known all have the remarkable ability to pause whatever deep emotional current they were overcome by in order to declare how ridiculous I am), “Books!” she exclaimed, “books, of course!”

Now it was my turn to give a look of incredulity.  “Chapter books?” I asked, trying to hide the suspicion in my voice. “Yes”, she said with exasperation, “of course the books have chapters”. I waited a moment, for she was trying to catch her breath and wipe her eyes.  When she finally looked up at me again, I held her eyes for a moment and then spoke intentionally very slowly so this could seep into her heart, “my children can’t read chapter books! They know some words, and all their letters, but my children can’t read like your daughter. “   Immediately, her hands went up to cover her face.  The tears had started again, but there was something else there in her eyes, something that looked a lot like someone trying desperately to suppress laughter.  The fight did not last long, for it was within less than a minute that the laughter won, and all she could do was try to stifle the volume with her hand and attempt to stay upright on her rickety chair.

For an instant, but thankfully, I don’t think my face betrayed me, I was honestly offended that she would laugh at my childrens’ inability to read at the level her child could.  But it was that thought, or to be more accurate, the emotion with which I felt that thought, that finally made me see what I had been missing all along.  She saw my girls in the photograph dressed in their pretty dresses, so similar in features to her own and she assumed that her lack in economics, opportunity and education would reveal themselves when I compared her girl to mine.  Therefore each question of my interview seemed to her to only establish more completely how stunted her daughter must be; born in a hut, no early diagnosis, no physical therapy, no occupational therapy, no speech therapy, had never seen a developmental pediatrician, never seen a pediatrician at all, no, no, no.   And although I never thought this even for a moment with her, I imagine she added to that list of “no’s”, “has a good mother” – NO!

But for the very reason that she is a good parent, she felt that all her daughter’s lacks or weaknesses were her fault.  Which was why her daughter not being able to read as fast as other children weighed on her so greatly, it was just one more NO.  The “no” that broke her mothers heart.  Not coincidently then, it was my parental “no” that brought her consolation.  For all our girls’ many advantages, for all their “yes’s”, we too, had our “no’s”.  I realized this and it was easy to laugh with her, rejoicing over her daughter’s “yes”.

Something special happened after that.  We talked at some length but the interview was over.  We were now just two people desperately wanting to be good parents to the children we absolutely adored, who in God’s providence all happened to have Down syndrome.

After some minutes I concluded my expansive and nuanced “explanation”, and she thanked me, whether for what I said or merely for choosing to stop, I can’t be sure. She then looked at me very intently for quite some time and at first, I thought my insightful dialogue must have prompted some hitherto unconcieved deeper query, then I recognized the way she was looking at me was just the same way my twin girls look at me when they realize I have completely misunderstood their very simple request. So, in this way, she addressed me again with the same question but much slower and louder, “Whhhyyy..iiiss…mmmyyy…booyyy…diiifffeeerrreeennntt…ffrroommm…othhherr…chhhiildrrreennn?”

It was embarrassing to put this poor woman through such exaggerated attempts to be understood but thankfully I finally got it. Her question to me was not the meta-physical “why” but the pragmatic. Why is his speech difficult to understand? Why at sixteen is he still happy to have me tell him the same childrens’ stories over and over? Why can’t he write well or do math like other children? It was then that I realized that she did not know the very specific genetic condition that stood at the root of many of her son’s unique attributes, or in her words, “differences from other children”. So I went over to her son, and picked up his hand, and showed her the deep crease that crossed the palm, I remarked on the shortened length of his fingers and toes, I drew her attention to his handsome almond- shaped eyes with the unique fold at the inner corner, and, finally, I remarked on his adorable little ears that were set just lower than the typical ear is set. And so, I said, “your son has a genetic condition called Down syndrome, or Trisomy 21. To my surprise, the moment I said that, her son, who had been fairly quiet throughout my visit so far, proclaimed loudly, “yes, yes!”, and he smiled a huge goofy Down syndrome grin, like he had been waiting for 16 years not to be labeled, but to be understood.

Having spent so many years here in the US fighting against labels as boxes in which my children have been placed, I realized that day that sometimes a label can be the beginning of a framework to better understand someone we deeply love. Because that day, that Zambian Mother didn’t get a diagnosis for her child, but a way to begin to understand all the wonderful ways he was made.