Jean Vanier, L'arche, and disability communities

larchewavecrest.org

I've recently discovered the existence of a wonderful soul by the name of Jean Vanier, an untiring advocate for the intellectually disabled.  He has won the 2015 Templeton Prize for his lifelong work with the intellectually challenged adults. In addition to learning about Jean Vanier, I have learned of the Templeton Prize.  This prize seems so much more meaningful than the Nobel Prize which does not include a category for spirituality and spiritual contribution to the betterment and understanding of life. Mother Theresa is another auspicious recipient of this prize.  How did I not know of this before? 

Vanier "adopted" two intellectually challenged men into his life in the 1960's and from his experience of living with them has found meaning and insight about what living is (or should ) really be about. He is attributed to creating the L'arche (meaning ark, as in Noah's Ark in French) communities for the intellectually challenged adults.  The community is a small group home with competent staff, volunteers and assistants that live in the home to be "friends" with the residents. There is transparency with members of the community, a spiritual figure notably a priest is usually present (since this is a Catholic inspired organization) all to ensure that incidents of abuse (which can [and has] happened in larger group home facilities)  cannot go unnoticed.  According to their primary vision, L'arche doesn't foster relationships based on a patient/healer dynamic, but on true friendships between volunteers, assistants and the diabled individual. Vanier believes these people are capable of responding to love but, in order to love, one must first receive it .  This truth speaks for all people, not just the intellectually challenged.   His belief is that people with intellectual challenges are not in a quest for knowledge, power or prestige.  They just want to be loved and befriended. 

In this, he feels much can be learned about the way of being from a challenged person as they can teach a "typical person" the art of living as to be oneself and not feel pressured to compete, acquire more stuff, more knowledge, to prove oneself and their worth and not feel they need to one up another to feel important.  He quotes a passage from Isaiah 15 where the weak heals and teaches the strong.  In one of his quotes he states, "We have a beautiful vision, a vision to be like yeast in the bread of society, where the weak heal the strong."  This seems so idealistic and although there are open-minded people willing to learn from the "lame" most people abhor and shun disability- I think because on some deep level, they are afraid  to acknowledge the possibility or the potential for their own selves being disabled.  As a result, it produces fear within them which then leads to hatred, abusive behaviors and bullying which are rejections of what they abhor within themselves.

Vanier speaks with such hope and faith in humanity and I wonder where he gets this faith when all I see in the evening news is how someone was randomly shot in a drive by, or children were abducted and killed, or domestic violence destroys the whole family's lives.  I don't think Vanier watches the evening news very much and I probably shouldn't, either.  It is not good for my soul to hear the worst in humanity pointed out to me on a daily basis.

 L'arche is an international organization with homes all over the world. I have found one here in Southern California in the city of Orange.  I hope more L'arche communities form in Los Angeles county, too.  

"Courage to Surrender Control"

So, today in our Journeys meeting, we discussed the chapter in the book we are studying, Another Kind of Courage titled Courage to Surrender Control.  The moderator asked what it means to surrender in our situation as special needs parents.  Surrender in our situation is somewhat confusing and contrary to what we need to do on a daily basis.  If anything, we need to be in absolute control of a multitude of things like coordinating various therapies, making sure the child receives all medications or supplements, adhering to a special diet (which can sometimes be very strict), advocating on behalf of our child in the community among people who may view us like aliens and even with educators who don't even have a education plan for our child - no, we need to make that up ourselves through the IEP.  So, surrender to God, surrendering to his Will all sound like things we as Christians need to do, and at some theological level we may do so, but on a day-to-day basis, we absolutely cannot surrender control and let things fall apart.

 The closest I have come to surrender is what I would phrase as acceptance of my son's condition. For a brief period after his diagnosis, I was so fired up about getting the right supplements, the right specialists, the diet and therapists in hopes that he would get better and not have a disability.  This just couldn't be happening to us! We are good people! We don't deserve this fate!  But, now I have come to accept his condition as being permanent, life long and a big determinant of what will shape our lives in the future. But, I have not resigned myself to believe it will be all doom and gloom.  He may not become the CEO of a Fortune 500 company or become the valedictorian of an ivy league university but I know there are gems of beauty waiting for us in our future.  Something immeasurable by the world's standards but only felt with the heart.  Beauty that can only come from deep love and compassion.  I so look forward to experiencing this and honoring Lucas' journey.  God doesn't look down on him say say,"oops, I guess I made a mistake there".  God shaped and formed him for a purpose so unique and different from others but no less worthy and I intend to honor this sacred contract we have with Lucas and with God.  How would he feel if only he received pity for his condition?  No, there is honor in his disability and in him being on this Earth. As time passes,  I look forward to God unraveling the mystery of his purpose.

The one thing I have learned from this chapter about surrender is that, for my own mental health, I must absolutely surrender and release the dream I had for Lucas before his diagnosis .  What wasted energy in pining for what could have been...Recently, an article was published by Autism Speaks about how there is so much hatred in the autism community.  Parents are lashing out at other parents, comparing their children in terms of who is more high functioning, the debate over vaccinations, bashing the direction and purpose of the leadership of Autism Speaks, etc etc..I have witnessed some of this negativitiy myself in my own Dup15q community and have decided I want no part of it. I don't judge these parents,  They are hurt, angry, bitter for the loss of their dream for their child.  It isn't fair. But, their suffering doesn't excuse the bad behavior.  Perhaps,they never have gone through the proper stages of grief and mourn the loss of a dream in a healthy way and are now  left with callouses so ugly in their hearts.  Not all parents have a spiritual discipline and I wonder how they manage to not let negativity suck out all the goodness and sense of gratitude in their lives.  I can't imagine treading this journey one step without a spiritual foundation based on Love and the knowing that a divine God is on my side.

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On another note, Luki has recently decided he wants to be a night owl and party it up all night. A few days ago, he went with 3 hours of sleep in 30 hours and he didn't seem tired. He has had episodes when he didn't sleep at night but he never went this long without sleep! Fortunately, he wasn't fussy but giggled the whole night and pretty much enjoyed himself silly.  Luckily, I had my melatonin at home and crushed a third of it and gave it to him.  He stayed home for three days after as it caught up with him and he was fussy and feeling sick.  This weekend, we went to Whole Foods and bought liquid melatonin,1 mg, just in case we need to use it in the future.  I told Gabriel to sleep in the nursery as he has work the next day. The following morning I was such a grouch with him (I hadn't slept all night!)  Poor Gabe....

He climbs everything!

He received his angel wings.

"You can Drink the Cup of Sorrow Only If You Drink It in Community." Henri Nouwen.

In recognition of disability month, Evergreen Baptist Church dedicated its sermon time to present a video testimony of a few parents of special needs children who are in the Journey's group. One teenager with autism even got to read a bible verse with his mother in front of the congregation.  The video highlighted the challenges of raising a special needs child and the expectation and hope the parents had that the church body would be a loving and accepting holy ground for their children.  One mother recounted an incident where a few people changed seats in the pew behind her once her intellectually delayed 36 year old daughter started having a "tantrum".  After the video presentation, the pastor interviewed a couple whose 6 year old child has severe seizures leading to his cognitive delays. It was hard to sit through the presentations without tearing up.  They showed pictures of their son as a healthy six month old growing typically like all other children, then having status epilepticus at around the age of one and never having fully controlled the seizures since.  I know all these families and their stories from the Journey's meeting which I attend once a month.  Gabriel and I have been attending the meetings for a little over a year now. We study various books and bible verses that help us deal with our unique lives.  Currently, we are studying the book, Another Kind of Courage- God's Design for Fathers of Families Affected by Disability by Doug Mazza and Steve Bundy.

After the testimony, the founder of Club 21, a support group for families with Down Syndrome shared her own testimony of raising a daughter affected by Down's.  She recounted the loneliness she felt when at a child's birthday party, all the mothers went to grab food and talk while she was stuck in the pool with her daughter who was not yet able to swim.  The loneliness she felt spurred her to start Club 21.  She also said a quote by Henri Nouwen in his book "Can You Drink the Cup?" changed her life to wit:

You can drink the cup of sorrow only if it is drunk in community.

It's true, this journey can not and should not be tread in isolation.  The gift -if you can see a gift in the situation at all- is that fellowship and relationship with people one would never have dreamed come together.  These relationships aren't fake or flaky, they are real and deep.  That's not to say that everyone will get along all the time, I have seen pettiness and the ugly side of negativity that rises out of fear, frustration and anger directed toward  special needs parents from other special needs parents themselves.  I hope to God that doesn't happen among those in the Journeys group.

All the children are so different, just as their diagnoses are all different. I hope the kids don't just get labeled as special needs and assumed to be all the same,  Just as this lady in the clip below says if you've met one child with autism, you have met ONE child with autism, so can you say also that if you've met one Dup15q child, you have met ONE Dup15q child.  Will people take the time to get to know the unique and special beauty of Luki's being?

https://www.youtube.com/watch?v=AmpChommG50

I feel very blessed to be part of a church with such a openness to learn about the struggles of families dealing with disability.  I know I am at that church by a divine calling.  One month prior to Luki's diagnosis, I felt an urge to attend that church without even knowing there was a special needs ministry - a rarity in most church congregations.  The day of attending the newcomer's meet-and-greet with one of the pastors, I was ushered upstairs by a children's ministry director to the Journey's group.  I thank God Gabriel agreed to go with me and not think I was crazy. I am still in awe of how God communicates to a soul.  For me, he placed a desire to check out the church across the street.  He speaks to me through a nudge, an urge, a desire.  I pray I would heed God's promptings more diligently in the future.
Here is a podcast of the sermon.

  http://www.ebcla.org/wp-content/uploads/2015/01/Empathic-Hospitality.mp3

On a more personal note, I have just celebrated 6 years at Kaiser.  The certificate below says 5 but it is actually six this year.  Gabriel treated me out to a fancy steakhouse called The Derby in Arcadia. Amazed how fast 5 years flies by! No job has ever challenged me more. I've shed tears of frustration, anger, sadness but also at the awesome Beauty of the human spirit as it goes through immense pain and suffering. And, despite personality differences among my fellow nurses, I appreciate every nurse I've worked with; after all, if you have administered kayexelate to a constipated homeless man and cleaning him up at 2 am and you're still open for two more possible admissions, you will always have my respect! 

A Wise and Ancient Soul who Manifests Himself Under the Guise of Disabiity.

 Recently, I came across a quote from another blogger mom with a child of autism, to wit:

 “In many ways we are like the busy man who walks up to a precious flower and says, ‘What for God’s sake are you doing here? Can’t you get busy some way?” and then finds himself unable to understand the flower’s response: “I’m sorry, sir, but I am just here to be beautiful.” * * Henri J.M. Nouwen 

She compared the purpose of her mentally disabled child to that of a flower.  I found this analogy beautiful but I wonder how beauty can be found in a situation where your child is incontinent until his teens, where due to being nonverbal, he pulls hair, clothes, scratches out of frustration; where the onset of seizures is a constant worry and fear a parent lives with everyday. How can I find beauty in knowing he will never be independant and the fear of abuse from others lingers over my heart.  Where is the beauty in knowing I may have to bury my child before my own death yet somehow hope that he goes before me so that I know I can always take care of him; or , the fear that he may be taken from me because I will be made incapable of taking care of him due to old age, finances, etc...These are questions I ponder and try to find the beauty in the situation.  Perhaps, there is no beauty in the situation but only in the soul that resides within the disability. It's all a mystery to me how the mind of God works and why a beautiful and ancient soul like Luki would manifest in this world under the guise of disability.  My mission and purpose is to discover the answer to all this and God willing, with time, I will have betters answers to the questions.  

Here is a clip from a session with Michelle Whitedove who saw into the depth of Luki's soul through his eyes.  A mother in desperation can go to just about anyone for answers and while none have been coming from the medical professionals or even religious leaders, I found great comfort in her words and hold them to be true and real.  I look forward to getting to know Luki even more as he grows older.  

2014 A Year in Review

Lucas took his first school picture this year.  He has always felt older and wiser than his age and here he is going from 3 years old to 40!  Couldn't help putting on the tie. I think it goes nicely with the glasses. I can only hope that future school pictures will look as great at this one. It's hard getting special needs children to look into the camera and sit still which is why so many of them come out looking more special needs in school pictures. I may opt not to buy school pictures if this be the case. 

When I look at our little home all decked out for the holidays, it fills my heart with so much pride, warmth and bliss.  I get teary eyed at all the love we have within these walls.  Sometimes, on my way to work at night, I stop in front of the house across the street and just take five minutes to admire the lights we put up.  Not so much the lights themselves, but the warmth that is within the house.  I sit in my car in awe at what I have been able to achieve in my life and at the privilege of calling Gabriel my husband and Lucas, my son.

We attended 4 weddings in 2014!  Here, we are at Tom's (Gabriel's manager) wedding in June.  I so like this picture because we rarely get to be so silly together and here we have a silly shot for memory sake.

Lucas celebrates his 4th Christmas this year. Even though he doesn't quite get the concept of Santa bringing gifts and I don't have the pleasure of seeing him run down the stairs Christmas morning in his pajamas, I still love having him in his Christmas pajamas every year. In fact, we even went to the mall in his pajamas! This year, he is my cutest gingerbread man!

He still loves the water and this picture captures him in pure joy at being able to "catch" falling rain. I see God in his smiles and hear God in his giggles. He caught a cold after this romp in the rain!

He also went to see snow for the first time this year at Mt. Baldy.  He is not a big fan of cold weather and ice but with all things, I think with more exposure, he will grow to like it. Unfortunately, we live is So Cal and the opportunity to visit snow is limited.

We also went to visit Sycamore Mineral Springs this Winter.  Our visits are turning into an annual family tradition. He had a stuffy nose and was miserable the whole trip but loved the time in the mineral pool.  He slept for the rest of the car ride home afterwards and so did I.

That's the whole family in the pool. Wherever we are, I love that we are all together. 

Lucas can now signal to us when he has had enough.  He flaps his arms as if to say, "no no no!" Here he is trying to tell me he is cold. He was soaked wet in the rain which is probably how he caught his cold.  I am a bad mom. But, I loved seeing him so happy in the rain.  Note to self: buy him a raincoat!

December 30,2014

He loves daddy!

He likes to get tickles from daddy!

This shot melts my heart. 

He still doesn't know how to ride the "schoolbus" He can't push himself on it but likes to push the buttons which make music and sounds. 

I recently won a free home photo session worth $500.00.  Not sure why I didn't pretty myself up for the occasion but Luki came out fab and smiled for most of the pictures.  I made our 2014 Christmas card out of the pictures. 

Luki plays a piano duet with aunty Christine at grandma's house for Christmas.

For the last two days, Lucas has been very fussy, clingy and crying a lot and it is so frustrating to not  know what is going on with him.  He makes a lot of vocal sounds but is still nonverbal.  Usually when he acts this way, I can trouble shoot it with either sleep or food.  Yesterday, he cried for most of the day and was pulling my hair and collar.  I have seen him do this before but it was usually a cry of distress.  This time, I can't pinpoint what the problem is, exactly.  It breaks my heart to see him so and not be able to make it better for him.  Today was a bit better but he is still very whiny.  I think he is teething. Gave him Tylenol and was back to his happy self.

Today, we had our first community outing in ABA,  We had our session at the mall along with the therapist, the supervisor and a trainee.  All four of us were hovering over Luki and he was very fussy for the first half hour perhaps still feeling the pain from teething.  He refused to walk and participate in anything.  Having four people with him seemed redundant.  They were just watching him as I interacted with him.  There really isn't much they can do when the whole session revolved around the goal of having him walk the mall.  We just need to tail him and make sure he doesn't run off.  Somedays, I wonder if ABA is making any difference.  I have recently made it a point that I am the primary therapist and the person Easter Seals send is my assistant.  I don't think the therapists do a good job of initiating therapy. This way, I make sure he is getting the skills training he needs while also allowing for mommy and me time. After a while, Luki held our hands to walk.  He even held his arms up to the therapist to hold hands.  He is used to having his dad and myself hold his hand as we walk. Although nonverbal and not fully oriented to his environment,  Lucas is very into his routine.  He walked into Marie Callendars and walked toward the back exit door and walked across the parking lot to a car that looked like our minivan and stood there as if waiting for us to open the door for him to get in so we can go home.  This is the routine we have every other weekend for breakfast.

On this New Years Eve, after having cooked and eaten yummy chicken piccata, roasted kale, garlic mushrooms and a bit of wine for dinner, I count all my blessings and smile at the beautiful memories indelibly left upon my heart. I am taking all the beautiful pictures throughout the year into eternity and look forward to reviewing my album in heaven.,  Luki is still seizure free, growing taller and more handsome everyday.  Gabriel and I are still gainfully employed, healthy and happy. I am so thankful for God's goodness.

Flip side: Week 2 Questions

Today we will be looking at Numbers 14: 1-4
In Numbers 13 we saw that rumors were starting to spread. How do you think the rumors affected the Israelites response to the report from the spies? 
How do rumors affect our perspective?

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Read Numbers 12:31-33

Notice in verse 31 that some of the spies say "We can't....". Do you ever find yourself saying "Our special needs family can't....", "I can't....." or " My special child can't....."? What causes that hesitation to do certain things that in reality with God's help we could do?

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Week 2 (Tuesday-Part 2)
In Numbers 13:32 we see that 10 of the spies spread a bad report full of exaggerations. Do we as special needs parents fall into that same trap? What is the result when we do? How does that affect those around us?

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Happy Saturday! Raising a child with special needs can be very draining physically, financially, emotionally and spiritually. What are some things you do to help "fill your tank"?

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How do you view your child? Share your thoughts in the comment section 

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Week 2 (Friday)
As we close out week 2 of our Flip-side study on perspective here are some things to consider.

When you look at your life, what is your perspective? Do you see "giants" or "grapes"? Do you tend to look at things as impossible and see the negatives, or do you focus on and remember how big God really is?

Pray and ask God to to bring to mind the times He has been faithful. Write them down as a remembrance of all He has done. Read the list on the dark days when the "giants" seem to want to overtake.

Ask God to reveal areas in your life where you are doing the following and ask Him to help you in those areas.
1. Saying "but" or making excuses to not do what God has called you to do. 2. Saying "I can't" or "my child can't" when God says you can. 3. Spreading or believing bad reports or exaggerating facts to cause chaos. 4. Gossiping

Share in the comment section below a way God has blessed you recently.

How has God helped you face the "giants" in your life?