Baja #3B

After a quick tour of Door of Faith Orphanage, we went to our next work site:  Siloé Wellness Center (also in La Misión.) The story behind Siloé can be found in more detail on their website, but essentially, Sarah Mayer is a Physician's Assistant and the Medical Director.  She and her husband have been volunteering their time in Baja for several years.  For awhile, Sarah saw patients in the basement of a church.  Since they were outgrowing that space, Strong Tower partnered with Siloé to build a new facility.  The one thing Sarah really wanted for her patients: a waiting room.  She got that and more!  This property is still under construction, and we got a tour before we were given our work assignment for the day.  The clinic provides free medical care for those who live in La Misión and Santa Anita.  They do charge some for lab fees.  This provides incentive for follow up.  And there are people coming from far away to receive care here...they served 2500 patients in 2016, definitely more in 2017.  Those outside this community do have to pay some nominal fees.

artist's rendition of the facility at completion

the volunteer nurse explains some of the history (in the waiting room)

The furniture and most of the equipment in the clinic was donated.  And doctors, dentists and optometrists come down from the states to volunteer their time.  They are really praying for a Mexican doctor to work in the clinic full-time. The project we helped with was actually a building next door to the clinic that will be used for housing for visiting teams.  Our jobs included: clearing debris from around the foundation so that it could be sealed/waterproofed, filling in dirt holes around columns, cementing part of foundation.

 

All of us worked hard this day.  The weather totally cooperated.  It was not too hot.  And no longer raining.  It surprised me how much a volunteer work crew could accomplish.  Each week different groups come and provide a few more hours.  The space where we were working will also have a playground when it's all finished.

 

In between, the kids played soccer with the Mexican work crew...

video below of soccer game

The thing that touched me most this day was Manny.  Honestly, his testimony touched me more than anything else on the trip.  He spoke to directly to the kids.  He grew up with a mom who knew God.  He told all the kids to, "Listen to your parents and do what they say.  They really do know best."  He ended up getting off track, doing and selling drugs, became an alcoholic, some really bad stuff.  At some point things turned for the worst and the "friends" he made deserted him when he ran out of money.  He turned to Christ.  The story he relayed about asking God for a Christian wife was what made me cry.  The guys are praying with him here, as he asked for prayer for his wife, Nora (she had recently experienced a miscarriage.)

I actually met Sarah when I was at the daycare.  She was picking up her daughter from Christine's Kindergarten class.  She was talking to me about a patient she had that week with autism.  He was about 4 years old and was having trouble in school.  Developmentally delayed in some of the day-to-day stuff.  This sounded so familiar to me....Keaton was in that place when he was 3.  He couldn't talk.  Fortunately, we have so many resources here in the U.S.  We were able to get Keaton help and various therapy.  In La Misión, there's not much.  The school was telling the mom that her son needed a neurologist.  Sarah and I agreed that would only give her a diagnosis.  What the mom needs is help in how to teach her son to talk and toilet train.  Communicating with an autistic child is challenging, but there are proven methods.  Sarah was able to refer her to a pediatric facility in Tijuana, and she asked me to pray for this family....

the Life We Never Expected

Picked up another book from my reading list at the library....

"The Life We Never Expected" by Andrew & Rachel Wilson

The subtitle is: hopeful reflections on the challenges of parenting children with special needs.

The Wilsons are a husband and wife from England where he is a teaching pastor at their church.  They have two young autistic children, a boy and a girl.  This book took me only 2 hours to read, more or less.  It's got 152 pages, cover to cover.  The authors state at the very beginning, that they wrote this in the middle of their journey (2016).  So they don't have a ton of answers, they certainly don't have everything figured out, and they know their story is not going to be exactly like anyone else's story.  I'm glad they shared, though!  Because most of us ARE smack dab in the middle of our story.  And I think that's what we're supposed to be doing, sharing how God is with us and for us...as He is the author of the story.  They said they were searching for some solace themselves, "looking for a book that was not just theology or autobiography but also something that talked about spiritual survival...we couldn't find one, so we wrote one" (p 13-14).

As I mentioned before it's a quick read.  They begin by talking about how critical the Psalms are to their daily walk.  Andrew specifically looks at Psalms 130.  It's a pretty quick Psalm, only 8 verses.  But from there, he points out a pattern of how we can deal with suffering:

WEEPING ~ WORSHIPPING ~ WAITING ~ WITNESSING ~ AND BREATHE

For the rest of the book, each of them, Andrew and Rachel share short vignettes, explaining how they traverse life with two autistic children in this cyclical way.  There are 5 cycles like this, each unique, but it flows together well.  They are very cogent in how they pull their thoughts together.  And yet, they nail the emotional side of it too.  As a Christian, I love how they wove scripture throughout.  Some parts were specific to their days dealing with autism (much of which I could laugh at and relate to, but some of it was definitely more challenging than what I've dealt with) but I think the arc of the stories, and the pattern of how to deal with suffering, could apply to anyone in a difficult situation.  However, as the subtitle says, it was especially written for those families with special needs children.

I really liked the chapters Andrew wrote about learning to pray and healing.  He said (in pages 103-112) that he has had a hard time figuring out how to pray.  Because he has been completely frustrated with God's inactivity in terms of healing his kids from autism, yet has seen miraculous healings right before his eyes in his church or at conferences.  He is unsure if he's supposed to keep asking for the same thing over and over, or just accept "no".  The conclusion, came straight from the example of his autistic son.  And if you have any autism spectrum kids in your life, you know this to be the case.  They NEVER stop asking for the same thing until their brain is satisfied.  You either give it to them, or spend MUCH effort in MAJOR redirection on your part.  Andrew thinks we should always keep asking for healing.

The other thing was how he described different philosophies on healing.  I love this explanation, made me laugh, but in my experience, I have met all of these types of people:
"We have Tigger types who bounce around insisting that God will always heal us if we just have enough certainty that he will, and we have Eeyore types who mope around mumbling that disabilities are just part of the way things are and that asking God to heal us is a waste of time. Being a Winnie-the-Pooh type in the middle, believing that God wants to heal but trusting him when he doesn't, can be exhausting" (p110.)

Further thoughts on types of healing:
Type 1: our body has a cool natural ability to heal itself (cuts, bruises, infection, etc.)
Type 2: the miraculous, spontaneous, deaf can hear, blind can see kind of healing
Type 3: through medical technology, broken bones are set and heal, drugs can heal disease
Type 4: "A trumpet sounds, and the dead are raised in a flash, in the twinkling of an eye, never to perish again."

Bottomline, God sets all things right in the end.  Dealing with a special needs child may be challenging, but we all face challenges.  God gives us what we need to get through whatever circumstances.  We adapt. We change.  We are given grace and learn to give it to others.  But in the end, He will set all things right.  There's tremendous hope in that!  And what we cling to.  And why we worship Him....

Cycles

I don't know if it is the rain or maybe the fact that I caught a buck eating my rosebuds last night right off my front porch!  Yesterday and even the day before I felt pretty good.  Today I feel overwhelmed again.  The cycle is exasperating.

Encouragement.
  Success.
Discouragement.
  Defeat.

Yesterday the boys and I took a day off.  They were doing testing at the school, so the classes were cancelled.  We went to the movies and had lunch.  We had some fun!  But then today life feels like drudgery again.  I just want to be real...my heart is not always joyous.

When I woke up I was full of joy.  I was actually writing a song in my head.  Coming up with lyrics and it was all about Rising Up and calling the day Good!  But by 10:30am I was back to being frustrated.

This morning Keaton had his neuro evaluation.  We go 3 times/year.  If I look back over the last 7 years that we've been doing this, there have definitely been successes!  But if I look back the last 4 months, all I see is defeat.  His neurodevelopmentalist even said to me, "Do you need to take a break?  All I hear is negative energy. I think you need to get filled up on some joy."  I told her I need to pray about it. This (single) parenting a kid on the autism spectrum gets to me some days.

It's hard to explain how the 24 hours in each day gets filled, but it seems like when I look back, a lot of it feels wasted...I want to reclaim the time.  Need to turn my thinking around!

Best way to do that is to take a drive and sing in the car.  Here's a good one I've heard lately.
Mercy Me - Even If.  I guess I'm not the only one that has ups and downs.  We all have good days and bad, right?  I'm reminding myself to keep my eyes lifted up. He. Is. Good.




Even if you don't, my hope is you alone....

2 Movies

This week I watched two movies.  One took me several nights to get through; it was on Amazon Prime. Keaton actually pointed me to it, as he saw it when he was scrolling through Amazon Prime and he knew I had read the book.

"Life Animated" ~ Trailer Below:

"Life Animated" is a follow up documentary to the book by the same name, which I read last year, by Ron Suskind.  (See my blogpost about that HERE.) The book describes the younger years of Suskind's son Owen who has autism.  He writes about their family and Owen's life up through about age 19.  The book made me very emotional just because autism is so close to my heart. Keaton is on the spectrum.  But after much therapy, Keaton's autism is barely noticeable.  The thing is, the autism spectrum is vast and broad.  Owen had TONS of therapy too.  His parents were supremely devoted to helping him.  And after watching the movie, which depicts Owen's challenges as a young adult (age 23) traversing the wiles of the world of life on his own, I feel a bit more confident in Keaton's ability to cope.  His future is bright and filled with great expectation.  I cried with Owen's parents and his older brother as they watched him struggle and then triumph over his disabilities.  Amazing stuff.  I know that God will provide what I need and what Keaton needs to make it through.


The second movie: "Hidden Figures" was at the theater this week.

"Hidden Figures" trailer below:

I don't know what was more enjoyable, the movie itself? Or the fact it was not animated and I enjoyed it in the company of another adult, sans children.  This movie tells the true story of three particular African-American women who worked for NASA during the early 1960s at the beginning of the space race.  I laughed, I cried, and I shook my head in dismay.  These ladies were smart!! And they were strong!! One was a widow with 3 little girls!! And they did not give up.  In life and love they appeared to succeed despite a lot of societal and cultural distractions.  And they all played an important role in helping to get John Glenn into space.  I have a no idea if the physics and math problems they depicted were true to life (I vaguely recall differential equations from high school calculus, but the rocket science math in this movie was WAY beyond me).  The technical parts of it aside, I really enjoyed this movie.

Balance in all Things

My accountability partner and I have discussed that this whole "healthy-food-journey-as-an-act-of-worship" thing needs to be balanced. Just like a lot of things.... Deprivation breeds defeat. It says in 1 Corinthians 10:13 that all things are permissible, but not all things are beneficial. Let's just own up to the fact that ANYTHING in excess is indulgence and does not display self-control. So anyway, I don't want to obsess here, I just want to document. Though I am NOT the greatest food photographer....

Today I made chicken fingers coated in crushed Fritos and French fries. Both oven-baked. Took about an hour.

~Keaton: I am not eating that. (Referring to the chicken.)

~~Cole: Mom, this is great! Very crispy. You are a good cook, Mom. I even tried the honey mustard sauce Mom, without complaining, didn't I?

The fries were very potato-ey, and well, I'm not a huge fan of potatoes myself. But Keaton ate the fries...and two bites of chicken. That's one more bite than he ate the other day. I call that progress. It's more bothersome to him that the food was touching the other food on the plate. Corn chips are meant to eaten separately, not dipped in an egg bath and put on chicken. Oh, and he doesn't like the feel of the fork against his teeth. The experience of eating is totally different when you are on the autism spectrum. But no one got mad. No one cried. Again, progress.

"Life Animated"

This weekend I finished a book called "Life Animated: A Story of Sidekicks, Heroes, and Autism" by Ron Suskind.  Suskind is a Pulitzer Prize-winning columnist and the author of several books.  He is also a husband.  Plus he is the father of a son on the autism spectrum.

The reason I checked out this book from the library is the subject matter.  My son Keaton is on the autism spectrum too.  No, he has not been officially diagnosed by a neurologist, because Eric and I decided we didn't want to "label" him.  But he is definitely autistic to some degree.  Several therapists have alluded to it, though they can't officially "diagnose".  His symptoms mimic those who have been officially diagnosed.  He doesn't know what autism is, though I've tried to explain it to him and to Cole.  They don't know any different; Keaton has always been this way, and we've not made it an issue.  So it is a hard concept to grasp that Keaton is not typical.

Maybe you don't really know what autism means.  Maybe your only exposure to autism is "Rain Man" with Dustin Hoffman.  Let me explain: the autistic person has a lot of difficulty picking up social cues, exhibits rigidity in habits and intellect, has difficulty taking the specific to the general, experiences disorientation in unfamiliar situations, has trouble with attention and with receptive language. (p213)  They also tend to have some sort of repetitive, self-stimulating behavior like arm-flapping, muscles tics, hopping up and down, or banging their head against the wall, that sort of thing.  Keaton's stim is subtle.  He waves his fingers in front of his face when excited, upset, or scared.  His case is very mild.  Plus he has been in therapy since he was 3.

The book itself is basically the Suskind family's journey through autism with their youngest son Owen, from childhood to college.  They found (like we have) that they could use the rigid obsession with something (in Owen's case it's Disney movies) to their advantage in helping him to cope, relate, and communicate with others in the world.  That is the bulk of their story, how sidekicks and heroes helped Owen cope. If you know someone that parents an autistic child, or are interested in learning more about it, you might benefit from reading this book, but the real gem for me was that from one parent to another, I finally found someone who gets me.

Suskind gets the concept of thinking everything is going along fine with your bright and brilliant child and then losing that same child to the mysteries of autism around age 2 or 3.  Of researching everything you can get your hands on related to the subject.  Of denial that it really IS autism. To finally saying, yes, this perfectly describes my child.

Suskind speaks of a child who can recite whole passages of movies after just one viewing. A child who stops and rewinds the video during the credits and memorizes the names.  Keaton did not talk with us directly until he was about 3 (after a lot of therapy). But he could sing every line of most songs on Christian radio before he was 2.  He had no idea what he was singing, but he was (and still is) a great mimic.  Now he actually watches movies with the closed captioning on, if it is available, to help him understand what is being said.  Keaton is exceptional in remembering dates and facts and who produced a movie and what year and who the voice actors are.  He can recall innumerable facts about science and animals.  If he has seen it in writing or in a movie, he remembers it.

If you have an autistic kid, you know exactly what I am talking about.  And you know how something that would seem very simple for a typical kid requires a lot of prep for an autism kid.  Like a new environment.  A new teacher.  A new skill.  A new shirt.  A new pair of shoes.  A new anything.  They don't like new and different.  Honestly, besides my preacher, his wife, and one gal I work with, I just don't know a lot of people who have parented an autistic kid.  Given the statistics, there are likely more people than I realize.  But they've kept it quiet, just like I usually do.  It teaches you a lot of things.  It breaks down a lot of preconceived notions you had about parenting.  It's hard, but you just do it.

Suskind describes how a parent does everything they can think of to get the therapy or the school situation their child needs.  His wife basically took Owen all over the Maryland and D.C. area to see a cadre of therapists and attend various schools and find play groups and friends who would see him as just one of the guys.  She eventually homeschooled him and finally learned how he learns.  She was a mom so absorbed by the whole thing that she basically lost herself.  And he was a dad who sought a way to bond with his son in the only way he could find that works.  They immersed themselves into the world of Disney with Owen.  Because there, he could express emotion and be a part of their lives.  Plus they were trying to balance all of that with career and an older son that they didn't want to feel left out or somehow forgotten. I so get this!

Not everything in the book I agree with.  After Owen was bullied by some teens in his high-school, they used an immersion therapy that consisted of a game of go-fish with cards of curse words to help Owen get over his fear of hearing the bad words and not letting the words have power over him. (p217) That sounds horrible to me.  And he hated it too.  "I hate that word", he would say.

The trouble with this book is that it was all too real.  By the end I was fighting back tears.  The immense pressure on the family and the parents to make sure a child like Owen is able to make it on his own as an adult is hard to fathom.  The idea of letting them dream (Owen wanted to work at Disney and bring back hand-drawn animation) and trying not to dash their dreams with reality, is a huge thing to balance.  I feel that pressure.  I don't know if I'm "borrowing trouble" from tomorrow or if it's more like I'm trying to "prepare for the future" for Keaton, but I am certainly concerned.  Facing it without Eric to help is even more daunting to me.  He was the one person that understood right where we are with Keaton.  It's just hard to imagine meeting someone else that would get this.  Or that would be willing to jump into the autism game with me.

However, I know that God has perfect plans for Keaton.  And I trust Him in that.  Eric and I used to talk about how Keaton wouldn't be Keaton without the autism.  It is part of him and we have embraced it.  I feel confidence that God will give me what I need to parent Keaton.  He has thus far.  And He is faithful.

In the same boat

Recently, while standing in line at an unnamed fast food joint, I heard a child behind me sigh, very heavily, sort of a "grrrr." I thought Keaton was in the car, but it sounded just like his most frustrated "grrrr".  I quickly turned around to ask him what was the matter and realized, it wasn't my son.  The boy grimaced at me, and apparently at his mother who stood in line in front of me.

--"Wow," I said, "He sounds exactly like MY son.  He makes a groan that sounds precisely like that." 

She calmly said, "Yes, he did not want to stop halfway through town.  Now he's frustrated with me.  And he has autism, so that adds to it." 

--"My son too," I said, "So I completely understand.  You just learn to cope."  

She said, "It is sometimes difficult, but I wouldn't have it any other way.  Otherwise, he just wouldn't be who he is."  

I agree completely. Made in God's image.  He is God's child.

Then her son bounded around the corner, walked straight toward me, stuck out his hand to shake mine and declared very loudly, "I'm Nathan! Nice to meet you."

--I shook his hand and said, "I'm Lisa, it's nice to meet you too."

He wanted a drink.  His mom offered water.  He asked me if I wanted pancakes.  I said no.  "The pancakes are very good.  You should get the pancakes."  Then another patron walked in with a motorcycle helmet on.  "Helmet.  You need to take that off inside," Nathan said, very distraught.  The man refused.  He just didn't want to hold his helmet was all.  Nathan wanted to know if I had kids.  Where they were.  How old they were.  What I was doing today. Showed me the owies on his knees, elbows and face.  He had 1000 questions and comments he needed to make in rapid fire.

I know the life his mom and dad are living--but she's right, we wouldn't have it any other way.  Reminded me to be grateful for therapies and a special diet that help us deal with the challenges of autism.  It is a wide spectrum.  And I recognize Keaton is on the high-functioning end, as is Nathan.  But just as we realized there was something a bit different about Keaton, we were also given so much empathy for those in our same boat.  Isn't that a special blessing the Lord grants?

Love First

Today a boy sat down at the computers in the library next to Keaton. Something was vaguely familiar about him. And I could tell he had autism. But not until his caregiver entered the children's section did I realize who the boy was. It was Will.

I immediately spoke to his grandmother and said, "I'm Lisa Neufeld, Eric's wife." She hugged me and said, "I am so sorry. I think about you a lot. I have never been able to tell Will about Eric. He has pictures of him and Eric all over his bedroom wall. I was at the service." She went on to explain (though I already knew) that she brought Will to Eric's barber shop no less than 8 times before Will allowed Eric to cut his hair. See Eric knew from experience with autism, that he needed to have a relationship first. Gain Will's trust. I asked Will's grandmother who was cutting Will's hair now. She said he was going to a regular hairdresser now. Thanks to Eric, he is okay with someone touching his head now.

I gave her my business card. She knows my Keaton is on the autism spectrum too. She teared up as we parted. I mentioned the encounter later to some friends. And how I want to live a life like that. Eric just touched so many lives. I have learned so much from Eric's example. One friend expressed it best: "Yes. Love First."

That's it exactly. Love First.