Pink Clouds and Popsicles!

Happy October's Mother's Day, Jade Hooper Holmes! 

She's my daughter-in-love, and she's a rock star mother juggling a late teens special needs daughter, a typical 3-year-old, two other boys (11 and 15) along with a dog named Reko, a black kitty named Esmeralda, Sally the coon dog, Mr. Turtle, assorted cousins, and sometimes a snake or two plus her SuperHubby and (Great-Granny) Nanny (age 98) all in the same little house tucked under the trees, rhodendron, and laurel beside a mountain stream.

Daughter Vania has had serious cardio issues since her birth 17+ years ago.  When she caught an upper respiratory infection recently, she got clobbered especially hard.  Finally two days ago she ended up at Mission Memorial Children's Hospital for respiratory and oxygen therapy. 

On the way Jade and Vania were stunned by the beauty of the sky.  Pink is Vania's favorite color, hands down!  Jade posted on Facebook what she told Vania: Vania - Look!  God made the clouds pink just for you!

Another post describes a midnight popsicle party with pictures!  ... in the hospital! 

October is Down Syndrome Awareness and Celebration month.  I celebrate the blessing Down Syndrome is in my life in the beauty of our sweet Vania and her very special mom!        (published with permission)

Awesome Grandkids and Down Syndrome!

Haven't blogged lately as have had 3 grandchildren for over a week which I totally love but it is beyond busy! They are the greatest! Yesterday taking them to meet their mom my car overheated to the top of the red on the gauge. I turned on the heat full-blast to "limp" to mechanic. It was almost 90 degrees and not one single word of complaint! Pretty impressive! In lieu of new post until later today (hopefully!), read guest post for Gillian Marchenko yesterday:

http://www.gillianmarchenko.com/a-dream-and-a-battered-heart/

An Awesome Life!

AND the truth is that I give huge joy way beyond my size! My heart for people is as big as all outside! I have lots of love and joy to spread around! (That is, if pictures could talk.)

Isn't she adorable? I don't know her or her name but I have some special friends who - like her - are defined by their happy love not by any diagnosis including a beautiful granddaughter!

I praise You for I am fearfully and wonderfully made. --Psalm 139:14

To Include or Not to Include???

To include or not to include? Include in what? Include where?
Basically the term inclusion is used to describe an educational model (applied in various settings) where students with special needs spend most or all of their time with more typical students. The concept becomes difficult in determining how to implement this practice.
I approach inclusion with more subjective than objective thoughts because I have a granddaughter who has Down Syndrome. She attends school in the same building she would attend if she did not have a Downs diagnosis. However, she goes to a single classroom. Her classroom is not bright and cheery. It is a bit dark and, from my observation, more baby-sitting than educating. There are no more than eight others in her "class." There is a "teacher" and an aide. But, from what I can see, the "teacher" doesn't do much teaching.
Vania doesn't get to change classes like other middle school students. She doesn't get the mental challenge of inter-active learning even on a modified basis.
Vania comes to school every day dressed very typically if how the other students are "decked out" is the indicator of typical. In fact, she makes a teenage fashion statement. Truth be told she loves knowing she looks cool!
I don't know what her typical day looks like but from just stepping into the classroom there didn't appear to be anything much going on. There was no music or books. There were no cheery bulletin boards. There were no learning or activity stations. It almost seemed to me like school for Vania is a time warp she walks into each day. The other students - some who appear to have more profound needs than Vania - don't seem to be doing much of anything either. The classroom is off down a fairly long dark hall. It's about as far from inclusion as a classroom setting could be!
I do understand that there are challenges to inclusion in an educational model. Just like for more typical students (whatever typical means) there is a wide range of ability among students, the same is true with students categorized as special needs.
Have you ever seen a truly typical middle school student? Personally I'm not at all sure what typical looks like in a middle school setting! The other day I was just hanging out with some middle school students who would probably pass for typical. There was not one single cookie-cutter kid in the bunch. Some even looked a little strange with all kinds of piercings (tongue, ear, lip, cheek and other unnamed places) and tats anywhere and everywhere. The style of dress can only be described as eclectic.
At home Vania has lots of stimulation in activity, media and family time. One of her very favorite things to do is take care of her new little baby brother. She loves him and he loves her! She gives him very good care. She is very responsible with her baby brother.
There is no one size fits all in any educational model! Inclusion is not achieved with a cookie-cutter mentality. In my opinion, inclusion that is effective requires educators and parents coming together to think outside the box and step outside their comfort zones to maximize the educational experience for every child!
The challenge goes to educators in both school and the church. The challenge goes to parents of both typical and less traditional students! The challenge goes to friends and advocates! The challenge is to dialogue and ponder and evaluate how to include every child in every possible way at school, at church, and in life in general!
I sit in on some special need network parent meetings. Sometimes there is so much pain in the room that I can hardly bear it! The stories Moms tell ................ Moms of mainstreamed kids at a local high school tell about their kids in regular classes for most or all of the day but then ostracized at lunch to sit at a table alone or with their "peers"! It's heart-breaking!
My Vania is very social! She loves people! Whenever I hear these stories, what I hear in my heart is the pain because I know my Vania needs to be included in every possible way! She is being raised by loving parents (and extended family) along with her three brothers and included totally.

We HAVE to find a way to be more inclusive! It matters all the way around! We ALL need each other with all our diversities! That's what gives depth and texture and color to the mosaic of life!

Celebrate Vania!

March 21st is World Down Syndrome Day. It's one thing to acknowledge a special day for special people! BUT it's quite another thing to celebrate a particular person who is in your heart!
Here's to our Vania! We love you!

My Three Special Granddaughters!

I have three really wonderful granddaughters. Two of them have been mine since birth. One came later.
Here's a special story about these three of my heart!
Clara and Abby first met Vania on a family vacation outing at Biltmore Estate in Asheville NC. Vania is the oldest at 15. Clara and Abby are 8 and 9. When they met it was obvious that they were intrigued with each other but also shy - just not quite sure how to relate to each other. Clara was particularly hanging back.
At that point in time, Vania's mother and our son were just engaged. Six months later they married after a "lifetime" of waiting for this love of both their lives!
The next time I saw Vania, Clara and Abby weren't there. Vania came into the house and ran from room to room upstairs and down. I followed her. After she had peeked in every room she leaned against the door frame, looked at me and said, "Whur the gurls?" It took me a minute to understand. She was looking for Abby and Clara. She was totally disappointed when I told her they were far away at home in Virginia.
A few short months later all three girls were in the wedding in their beautiful red silk dresses.
When Vania got to the front of the church, she was so happy her mother was marrying "Daddy Dave" that she literally danced a little gig! It was so precious!
The three girls bonded a little more at the wedding.
One reason Clara didn't quite know how to relate is that Vania is special. She has Down Syndrome. She has limited ability to talk clearly. She marches to her own drummer. She has a heart as big as the outdoors, a beautiful smile and a keen appreciation for giving and receiving love.
What about now? How is that relationship turning out?
Here's what happened yesterday: one of our grandsons, the brother of Abby and Clara, (all three are visiting us in Pittsburgh for a week) had a bad ear ache. We went to Med Express since it was Saturday. All of us went back to the exam room. The nurse was getting a history. She asked some questions about family health. Clara piped up and said, "Well, Vania has something. She has Down Syndrome but it's not catching and she's our cousin!" It might not seem like such a big thing except it spoke volumes about how far their relationship has come. What started as a little uncomfortable - the new and unknown - has come around to a matter of the heart with acceptance and love!
That's pretty special! It is truly a story about restoration deep in the heart!
Jesus, thank you for granddaughters who love and appreciate each other!

For Shame!

every-story-has-two-sides-but.html?utm_source=feedburner&utm_medium=email" name="1">every story has two sides. but.
(Posted: 26 Jan 2012 09:01 PM PST Written by my friend Shannon Dingle)
Every story has two sides.But.I’ve heard enough first-hand stories from families with special needs about churches who have rejected them.I’m not talking about stories like “well, they just weren’t sure what to do with us.”No, I’m talking about conversations like the one I had with one of our moms after respite, when she, with tears in her eyes, told me, “We love the church. My dad is a pastor. But we don’t go to church anymore, because our last church asked us to leave.”
Please take a moment to process that before you move on. Take a moment to consider how you’d feel if you were asked to leave the church because of your eye color or skin tone or height
or IQ or some other attribute you can’t control. This child wasn't aggressive or dangerous; they were asked to leave because the children's ministry leaders said his autism was too distracting. If I were writing about a church that kicked out a family because their son was black, we’d be outraged. But sometimes when I share the stories I hear from the families we serve in Access, someone responds, “well, you can't really fault the church. They probably just didn’t know how to handle it.”
Maybe it’s because I’m dosed up on enough prednisone to work me into a bit more of a ranty state than usual (and to allow my asthmatic lungs to work), but let me tell you what I think of that sort of response: it’s baloney!
When church leaders kick out kids who aren’t up to the general education expectations they are used to, they don’t need our excuses. They do need grace. And repentance. And yes, training. And prayer. When I see tweets like this one (related to this story) three prayers come to mind: Jesus, help this family.
Jesus, let this church learn from this situation, even if the facts being reported aren’t completely accurate.
Jesus, please come soon. Amen.

Read this and weep!

Denum Ellarby Refused Communion Because He Has Down Syndrome, Parents sayEllarby Re

Denum Ellarby Refused Communion Because He Has Down Syndrome,
First Posted: 1/21/12 04:10 PM ET Updated: 1/21/12 05:34 PM ET
href="http://www.huffingtonpost.com/2012/01/21/denum-ellarby_n_1220896.html?view=print&comm_ref=false" rel="nofollow">React
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Ellarby says her child wasn't allowed to take his first Holy Communion because he has Down Syndrome. In a letter from the Diocese of Leeds, Ellarby was told that her seven-year-old Denum Ellarby lacks the "concentration" necessary to prepare for Communion, according to the BBC. The Diocese also said children can "only proceed to the sacrament of First Communion when they take part in the Church's life and understand the Church's faith"."It's just disgusting," Ellarby told the BBC. "I feel really let down by the Catholic faith."A spokesperson for the diocese told the Catholic Herald "Denum's family has not participated in the regular life of the Church or in the preparation preceding First Communion. We hope that this will change as Denum grows and we are working with him and his family to help him achieve this."The Christian Post reports that Clare and Denum's father Darren have started a petition in support of their son. "They need to have more compassion," Clare Ellarby told the Post. "What they are doing is so cruel." CORRECTION: A previous version of this story incorrectly stated that Denum Ellarby has autism.

My response:
Thanks, Shannon! This is EXACTLY why there is A Restoration Church in Pittsburgh! This very issue is a huge travesty, great shame and blight on the name of Jesus (Who spent most of His time on earth hanging with sp needs individuals and Who came to restore brokenness in every form!)!
But we must not hide behind the church as an institution clicking our tongues and shaking our heads in Phariseeical disdain unless we personally are clear that this kind of rejection even secretly and silently is NOT
God's way and is hugely destructive of a person's heart - a person Jesus values, loves and died for!

Listening with my Heart

Recently my sister-in-law spoke to me about my son's family and particularly my granddaughter who has Down Syndrome. She said, "Obviously she is so loved. You can just tell by how they care for her. She always looks so adorable. She's always included in the middle of everything because she is so special."
It is true! Vania has a hard time expressing herself. I have to listen carefully to "catch" her words. She is saying something significant when she speaks. She just has a different way of speaking. I have to listen with my heart as well as my ears.
It is also true that Vania is greatly loved! Her mother treats her like any other young teen and dresses her in the latest style. Her mother has loved her from before she was born and through all the challenging years in-between: multiple heart surgeries and all the accompanying challenges that come with special needs.
My son married her mother several years ago. He too loves Vania with a Daddy-heart and Vania knows it! She sits as close as she can to him and calls him "Daddy Dave"!
Vania calls me "her" and her Granddaddy "him" but she knows who we are and always gives her special hugs and smiles!
Vania's name is the Englishized rendition of the Hebrew word for "Gift of God." She is truly that - God's VERY special gift to our family!
God, thank you for sending me Vania to love and to love me! Help me to love her well!

"Disability" Defined

"Disability" is a word accompanied with a world of experience that radically affects living OR "disability" is just a word that applies to OTHER people. Just like the saying that into every life some rain will fall, it is equally almost certain that into every family "disability" in one form or another will happen.

Disability can come with happy events like the birth of a child. Disability can occur as a consequence of life as parents age. Disability can come crashing in through an accident or circumstance that suddenly changes everything. Disability can creep up in a genetic disorder that may present at birth or later in life.

Disability stories are as varied as the families and individuals affected by disability, but everyone has a story who lives with disability. "Disability" isn't a label nor is it a wall. "Disability" is a way of living with challenges that may look as different as any of the milions of individual affected by disability in our world.

In truth, we are all disabled or broken in various ways. That doesn't mean we all qualify for that more convenient parking place with the special sign. No! Those should be reserved and even guarded by those more able for others who need quicker or more convenient access to shopping, schools or church.

Recently my husband and I were in California visiting the famed Getty Museum with its vast art treasures and beautiful gardens. We found that our friend (who was with us, who has legs that don't work due to an accident during his birth and who gets around on a skateboard when he isn't in a wheelchair) was scolded by the guard for being there on a skateboard. It is moments like then and when I see someone very able walking away from parking a car in a spot reserved for handicapped parking that I want to roll up my sleeves and jump in with both feet to advocate for mercy and justice!

Often people with obvious or severe disabilities are marginalized or disenfranchised from normal society including the church.

• Maybe they have a shorter attention span - so do my grandchildren and they don't fit a particular "disabled" category.
• Maybe they make different noises to express themselves but then, so do my grandchildren.
• Maybe they just cannot sit still and are prone to wander around in a room - so do my grandchildren!

Recently I heard an uncle tell his nephew that he was glad he didn't drink anymore since the train ran over him and that he (the uncle) had been praying for him. I was horrified both for the uncle's calloused heart and for the nephew's broken life!

Jesus met a blind man one day (John 9) who was stigmatized for his blindness as either being a result of his own sin or his parents. The general conclusion society of that day drew was that blindness was the result of God's judgement on him and his family. Jesus clearly and sharply refutes both views and says simply that the man was born blind so that God's glory could be seen in the world. God's glory seen through blind eyes - now that's a new view of disability, isn't it?

I recently read an observation by Al Condeluci, Pittsburgh human service advocate and teacher, about group homes. Condeluci said that he lived in two group home situations himself: his college dorm and a military barracks. Condeluci says he didn't enjoy either group home experience. His point was that group homes may not be the best way to deal with people profoundly affected by disability. He advocates inclusion rather than exclusion.

Condeluci observes that conditions like cerebral palsy or Down syndrome cannot be fixed. They are conditions of life. Individuals with CP or Down syndrome can be valued members of society and are wonderful friends to be included in community rather than marginalized. They have conditions that limit them in particular ways, but so do people who are overweight or very tall or very short or very young or very old.

We need to change the way we think and act toward our friends who live with life-altering disabilities. We need to see them as valued friends who can contribute much to enrich our lives when we live in community with them.

That's EXACTLY why there is A Restoration Church gathering in the South Hills of Pittsburgh! We welcome the opportunity to live, worship and grow into a caring community of grace, faith and love intentionally including individuals and families affected by disability!

On the World Stage - Sarah Palin and Family

To be a candidate for public office in these days and in our culture is literally to be in a war zone and deserving of combat pay, in my opinion. I have watched Geoge W. and Laura Bush over the last almost eight years keep going under incredible adversity and attack. Regardless of whether I agree with George W.'s decisions on various issues, I certainly wouldn't want to walk in their shoes. It is just not worth it - neither for the pay grade or the future legacy!

I ask myself whether we should give deference to the public servant who serves in this highest office simply because of the office even when we disagree. I conclude that we will never be able to find the brightest and best to lead us if we continue to attack them so viciously. The cost is just too high!

Now we have a candidate's daughter having her most private life exposed to public view. She is only 16 years old. She may have made "a mistake," but she and her parents are apparently "walking the walk" of what they declare to be a principle of living - right to life for the unborn. They are living out their pro-life position for all the world to see.

Trig Palin is only four months old. He has a disability - Down Syndrome. His parents both (along with his three sisters and older brother) love and treasure him apparently even more! Sarah Palin, Republican vice-presidential candidate 2008, stood before the world last Friday and declared how much she loves and values her "beautiful baby boy Trig."

Look and listen. You won't find any victim mentality in the Palin family. They feel blessed. Todd Palin, Trig's father, said after the pre-natal diagnosis of Down Syndrome, that the question to ask is not "Why us?" but rather "Why not us?"

When I first read rumors about Trig over the weekend on the web, I wondered. Now his sister's pregnancy (for all the pathos in it), proves without a doubt that Trig is his mother Sarah's child. It is impossible for Bristol to have birthed Trig four months ago and be five months pregnant now. There is irony in that which should shame even the staunchest of critics!

I woldn't want to trade places with the Palins even if they do win and spend at least the next four years in high public office and view. We treat our highest public servants (President and Vice President) so disrespectfully that I wonder why anyone is willing to pay the price. From what I see and know of the Palins, I can only be thankful that they are willing.

They are also demonstrating - for all the world to see - that their professed faith is alive and well!

What an incredible life example of living out professed belief on the world stage - painful - exposing - but also incredibly powerful! The truth of having a restored heart (made new and being made new by Jesus Christ) is most awesomely demonstrated in the difficulties of life - whether it's just an "ordinary" person or a public servant in or running for high office!

Death in Baghdad Marketplaces - Death by Disability

On February 3, 2008 two women strolled through two different markets in Baghdad, Iraq. Many more people other than the two women were in these two markets that day, but these two were distinctive for several reasons. Postmortem examination of their bodies reveals that both had Down syndrome. Both also had bombs strapped to their bodies: one in a vest, the other in a backpack. They passed by security and evaded inspection because they were known to be local beggars. Also, because they were woman male security forces were reluctant to search them due to the restrictions of Islamic law.

Apparently people with disabilities often beg in Baghdad's markets so there was nothing particularly unusual about these two women except for the small but significant detail that they were both walking bombs. Apparently the bombs strapped to their bodies were detonated by remote control.

The women probbly didn't even know they were walking bombs. Like most Down syndrome people, they were most likely very compliant and sweet-natured so would be unlikely to process the danger both to themselves and others.

The markets targeted are interesting. One was a "pet market" and the other was a "pigeon market." Neither would logically cross the radar as targets for terrorists. That's the nature of this terrorist enemy - there is no value of life and the rules of engagement constantly change. The only thing that counts is accomplishing their terrorism goals. They strike in totally unexpected places and ways.

The total killed in the two bombings was close to 100 people with many more wounded. In the process, shops, stalls and wares were also destroyed. One commander on the ground reported that these particular bombings are a new "low" for al-Qaeda.

The devastating aftermath of these blasts stands in stark contrast to what God calls us to do and be in our own marketplaces. Rather than walking death, God calls us to be walking life (restoration) in a world gone mad. That only happens as God's restoring grace invades one heart at a time! Then restored hearts "stroll" through the marketplaces of our world spreading light and life rather than death and destruction. And that's precisely why there is a Restoration Church starting in the South Hills of Pittsburgh!