Opening the Curtains

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Before becoming a mother whenever I heard the term “high-functioning autism,” I used to think, “Oh that just means that there really isn’t anything wrong with the person.”  Now I am the mother of a child diagnosed with high-functioning autism, and I know how wrong I was.  I understand that high-functioning means that my son can speak, he can feed himself, brush his teeth, use the toilet, bathe himself, dress himself, etc.  However, he doesn’t function like a typical 8 year-old boy.  On my Facebook page I celebrate the highlights of my children’s accomplishments.  I determined that I would not use that platform to complain or to draw sympathy or to in any way talk about the struggles we have with our children.  However, here on my blog, I have the freedom to share some of the gritty details of what our life is like with an autistic boy in the family.  Not to draw sympathy nor to complain, but to open the curtains so people can see more of what really goes on and perhaps gain understanding and insight so they might have compassion when they see a child acting out in a peculiar way.

A few months ago a friend of mine posted a meme on Facebook:

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I cringed because I know people have made that accusation about my son as well as making other accusations about my poor parenting skills.  I had to respond to my friend that sometimes that bratty behavior really is a disorder, and I asked the question, “How would you know?”  Most often, you wouldn’t know the difference because what you are witnessing is a brief snapshot of a moment in time.  In that moment you may be seeing a child in the midst of an uncontrollable raging meltdown and the parent staring glassy-eyed into space and ignoring her child.  You may think, “Why isn’t she doing something?”  The simple answer is that there is nothing she can do at that moment except try to keep calm and wait for the storm to pass.

When an autistic child is in melt-down mode, their limbic brain takes over.  This is the area of the brain that is responsible for emotional and social responses.  In melt-down mode they are completely irrational.  They can’t simply calm down.  Any word spoken to them is like a sword piercing their ears.  Any touch is like fire on their skin.  It is typical for a child like this to have up to ten melt downs per day lasting 20 minutes on average.  That’s 200 minutes.  That’s 3 hours and 20 minutes of screaming.  Every. Day.  That glassy-eyed parent is merely trying to cope.

Hyper-sensitivity to sounds

My son is hyper-sensitive to sounds, so going out in public can be difficult for him.  Imagine being in a restaurant.  What are the different sounds you hear?  People talking.  Dishes clinking.  Music.  Babies crying.  To us, some sounds are loud or soft, and we have the ability to filter sounds so we can pay attention to the conversation at our table.  For my son, everything is loud, and the most irritating sound to him is any noise a baby makes.  My son squirms, complains, and can be down-right rude in his comments about the baby.  He has no filter.  He is being brutally honest about how he is feeling.  The only thing that helps is having him wear sound-protection ear muffs to block the sounds.

To give another example of his hyper-sensitivity to sounds, we were staying at a hotel and he really liked to watch various elevators.  There was a glass elevator in the lobby and regular elevators other places.  He studied them.  When I could finally get him to move on, I was surprised to hear him comment about how the elevator in the lobby had a higher tone than the elevator that was close to our room.  Who pays attention to that?  My son.

Rigidity in routine

My son schedules every moment of everyday, and everything must happen exactly at the time he schedules it or the entire day is shot.  An exaggeration?  Nope.  If he schedules something at 9:00 a.m. he will stare at the clock and wait for it to be 9:00 before he starts his scheduled activity.  If his mind drifts off for a moment and he looks at the clock and it says 9:01 he goes into a melt-down because he missed the time and he doesn’t know how to do what he scheduled at a different time.  He becomes so distraught that he will say things like, “I don’t want to be on the earth,” which is scary to hear.

Oblivious to social cues and manners

We were at a concert at church a few weeks ago.  Before the concert started, the woman behind us introduced herself, and my son introduced himself, “Hello, I’m Aaron, and I’m a human duck.”  The woman was understandably puzzled and didn’t know how to respond to that.  Yes, my son has convinced himself that he is a human duck.  This is due to a cartoon character named Quack from the show Peep and The Big Wide World.  He even takes it so far as to walk like a duck, and quack in the middle of talking.  He thinks he is being cute and funny and has no idea that he comes off as weird and strange.  It’s heartbreaking knowing how much he longs for friends, but this strange behavior repels people who are meeting him for the first time.

This past summer there was a neighborhood night out event.  This is a new neighborhood for us, and my husband went to meet our new neighbors.  He was talking to someone who had children close to our children’s ages.  When he mentioned that our son is autistic, the person became uncomfortable and distanced herself.  It was clear to me that these people don’t want to deal with an autistic boy being friends with their kids.

Aaron has difficulty with group games, especially games that involve physical activity like running or throwing a ball.  He’s awkward and slow.  He has issues with his gait and with balance, so he doesn’t run as fast as other boys his age.  Due to issues with under-developed depth perception, he doesn’t throw and catch as well as his peers.  Team sports don’t work for him because he doesn’t pick up on social cues about what is happening in the game and each person’s role on the team.

His strange behavior also affects our daughter.  One day at church, after service, he decided he wanted to be a baby and started crawling around the sanctuary.  Our daughter burst into tears and exclaimed, “I don’t like when he acts that way.  I just want him to be normal.”  So do I, Sweetie, so do I.

Conclusion

All this to say that when you see a child acting out in a peculiar way, don’t assume that you know what is going on.  The best thing you can do is to give that parent the benefit of the doubt that they are doing the best they can.  Offer to help them with their bags while they wrestle their child into their car seat.  Whisper in their ear, “You’re doing a great job Mom/Dad.”  If you know this family, invite them to your home.  Spend time with them.  Get to know them.  Dare to allow your kids to play with them.

I grew up with a boy who has cerebral palsy.  I was horrified to hear the story his mother tells about taking him to a playground and other mothers scooping up their children to get away from him…like his condition was contagious.  This was the early 1970’s, and I would like to think that we’re more open and accepting of people with visible disabilities now.  Knowing this story, when I was with my daughter at a playground over the summer, there was another little girl there, who had cerebral palsy, with her mother.  She looked to be about the same age as my daughter.  The mother was holding her up and helping her play on the different equipment.  My daughter noticed this little girl, and I whispered to her, “Would you like to play with her?”  My daughter agreed, so we joined her.  The little girl’s face lit up when my daughter started playing with her, and my daughter talked about this experience for weeks afterward.

Aaron likes to write stories.  His stories follow a theme which reveals his greatest desire, which is to make friends and have adventures.  My prayer for him is that he would experience that.

 

For the Common vs. Individual Good

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It never fails.  When trying to decide on an activity with my children, I’ll give them a choice, “Would you like to go here or there?”  Child A chooses “Here!”  Child B chooses “There!”  Neither is willing to compromise and do the kind thing and allow their sibling to get their choice.  So, the responsibility lands on my shoulders to make the choice that will usually leave one or both of them disappointed and protesting, “That’s not fair!”

Sigh…

Recently, a psychology professor, Dylan Selterman, PhD, at the University of Maryland included this extra-credit question on a psychology final exam:

Here you have the opportunity to earn some extra credit on your final paper grade.  Select whether you want 2 points or 6 points added onto your final paper grade.  But there’s a small catch:  if more than 10% of the class selects 6 points then no one gets any points.

Professor Selterman pointed to a concept called the tragedy of the commons as his reason for including this question on the exam.

“The tragedy of the commons is basically a dilemma between doing what is good for you as an individual versus doing what is best for the group,” the professor said.  “Now it stands to reason that people behave selfishly.  But if too many people behave selfishly, the group will suffer…and then everyone in the group individually will suffer.”

It’s an interesting concept to consider, and one that has been studied and analyzed for more than 100 years in the field of economics.  However, I just want my children to learn how to think of others before themselves, and what would be best for everyone rather than being selfish.  My desire for them is that they would know the pleasure of doing something for another without any regard to reward…just the pleasure of being a blessing rather than assuming they are entitled to whatever they want.  Selfishness is natural for someone who is young and immature, that’s why many stipulate people must reach a certain age before they can handle responsibility.

Think of it this way. If a father dies and leaves an inheritance for his young children, those children are not much better off than slaves until they grow up, even though they actually own everything their father had. 2 They have to obey their guardians until they reach whatever age their father set. (Galatians 4:1-2)

Why would a father set an age when his children could receive the inheritance he left ?  Obviously, he wants them to be of an age when they can handle the responsibility of the inheritance and not squander it.  Those who are immature feel entitled and excited about what they’re going to get; whereas, those who are mature feel the weight of the responsibility to honor their father who gave the inheritance, and they pray for wisdom to be good stewards of what they receive, and the latter often seek for ways to be generous.  Those with a generous heart are stirred with compassion when they see a need.

A man with leprosy came and knelt in front of Jesus, begging to be healed.  “If you are willing, you can heal me and make me clean,” he said.
Moved with compassion, Jesus reached out and touched him, “I am willing,” He said.  “Be healed!”  
Instantly the leprosy disappeared, and the man was healed. (Mark 1:40-42)

Jesus was not afraid of this man’s need when most would be repulsed.  He touched someone many would find grotesque, and I’m sure there was healing of heart, mind, as well as the body of this man.  My hope is that when my children see a problem or a person in need their first impulse would be to ask, “How can I help?”  I also hope that they will look for ways to be a blessing to others.

My hope is not in vain for I have seen glimmers.  A few weeks ago my daughter had a dental appointment, and she was rewarded with getting to choose a small toy because of her good behavior.  Of all the things she could have chosen for herself, she decided on a little plastic duck to give to her brother because she knew he would like it.  That’s what I want to see more of.

compassion

Our Journey of Hope–Six Month Reevaluation

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We just arrived back home from our visit to the Family Hope Center (FHC) for our son Aaron’s (age 7) first six month reevaluation.  The reevaluation process is a repeat of the initial evaluation–two days of intense testing and assessments on all of his neurological pathways to determine his neurological age and his percentage of function.  At our first visit in November 2014, it was verified that Aaron was neurologically 45.4 months (3 years 9 months), resulting in functionality of 54% with a severe brain injury.  We received a robust therapy program that we were charged with leading him through at home.  Then we come back every six months to check his progress and tweak his program to move forward.

To see an outline of what the therapy program looks like, please read my post Our Journey of Hope–The First Months.

We had difficulty implementing the entire program.  The first 3 months was a huge struggle.  Aaron simply did not want to do any of it.  I don’t blame him.  I wouldn’t want to do it either.  It’s physically, emotionally, and mentally demanding.  It took time to figure out how to make it work.  After fighting and struggling nearly everyday for more than 3 months, one day my husband simply gave up.  He told Aaron, “I don’t know what do say to you anymore.  I give up.”  Then he went into his office.  About 45 minutes later Aaron came into the office, “Daddy, I did it.”  He did all of his crawling all by himself.  From there, Aaron took ownership of his program and scheduled specific time each day to complete his crawling and creeping and has been consistent since mid-March.  Then for the last couple of weeks before our trip, Aaron was able to complete 80-90% of his program each day.

The FHC team explained that it often takes a year to get into the groove of doing the program consistently, and from participating on the parent support Facebook group, I realized that NO ONE was able to do everything everyday.  However, there were all sorts of encouragement that even doing some of the program would yield results.

We did experience a major breakthrough in the beginning of April.  Aaron regularly had 1-2 meltdowns everyday.  These were usually caused by a disruption in routine.  He would scream, yell in a high-pitched voice, throw things around the house, etc.  Additionally, Aaron kept “messing up his words,” having trouble articulating his thoughts verbally, and this was very frustrating for him.  So much so that he would angrily stop talking.  My husband called the FHC, and they suggested that we remove all fruit from his diet so that he eats only meats and vegetables at every meal.  Long story short:  We followed their dietary directions,  Aaron went through one day of detox, then 5 days later, my husband realized that Aaron was no longer messing up his words, and Aaron realized it too!  In the entire month of April, he only had 1-2 meltdowns, rather than 1-2 meltdowns per day.  He knows he’s getting better, and he knows this most recent improvement was due to removing fruit, and he doesn’t even ask for it.

Often, my husband and I discussed our perceptions of Aaron’s improvement.  However, we knew we could not be objective, so we were looking forward to some concrete objective numbers to determine whether or not he was progressing.  What they like to see is a gain in neurological development (measured in months) to close the gap between his neurological age and his chronological age which will boost his percentage of function.

We arrived at FHC on a Wednesday.  We were one of 6 families there.  The director explained the schedule, and we got started.  We began by meeting the nutritionist (who is also an M.D.) to discuss his diet, then we met with another doctor to go over his general health.  After that we met with the co-director, Carol, to begin Aaron’s neurological evaluation.  She tested Aaron’s vision (not just a chart like we’re used to, but how his brain perceives what he sees, and how his eyes are tracking).  His tracking improved, but he still doesn’t track smoothly (which is important for reading), and when she had him follow an object with his eyes in a circular pattern, he always lost sight of it in the upper left.  Then she moved onto his hearing, and he had some slight issues with identifying where various sounds were coming from, but a definite improvement from last time.  Then for tactile, he had to identify heads or tails on a coin by touch.  Last time he never got it right.  This time, he never got it wrong!!  She tested his ability to smell.  Again, there was an improvement, but there are still issues with this.  He does not like the smell of anything–lavender, lemon, cinnamon, vanilla; however, the one smell he kind of tolerated was black pepper.  One thing I notice is when introducing a new food, he will declare that it smells terrible but tastes yummy.  There’s a disconnection there, and we have some work to do to help him in this area, which is part of his limbic system and controls his emotions.

After a break for lunch, Carol tested his reading and comprehension.  Aaron can read anything you put in front of him, but that doesn’t mean he understands what he’s reading.  For the last visit he missed all but 1-2 comprehension questions at the 1st grade level (which is where he should be).  This time, he only missed 1-2 questions at the 2nd grade level, and Carol read a lengthy 3rd grade level story and verbally asked him some comprehension questions.  He only missed 1!  In 6 months, he went up an entire grade level.  Keep in mind that we haven’t been able to do any school work.  We decided that the therapy program to heal his brain function was more important and that he would catch up academically, and that is what we’re seeing.  As his brain is healing he is able to take in and process more information.  So, at the end of the day, Carol sent us out of her office while she calculated the results.  In 6.5 months:

Aaron gained 19.7 months in neurological function…that’s more than a year and a half…which is a 303% improvement!  He progressed from 54% brain function to 72.8%, and the level of his brain injury moved from severe to moderate.

You may ask, what are the improvements we’ve seen?  Well, Aaron is much happier and much more social.  He plays very well with his younger sister, and joins in with playing with kids at church.  Aaron participated in a home school co-op, and my husband felt comfortable enough to leave him in the class while he attended the parent encouragement sessions.  Reports were that Aaron behaved and participated with the class very well.  He has a much greater ability to articulate his thoughts, which is a relief to us, because before we were at a loss for what was really going on with him, now he can tell us!  It was really fun to have the FHC team read through notes from our previous visit and discover that issues that were monumental then are nonexistent now.

The second day was a series of appointments with various team members to develop his new therapy program: sensory, breathing, mobility, and learning/social.  We are now home with a tweaked therapy program, and ready to move forward.  Our biggest issue right now is Aaron’s rigidity with routine and schedule.  Aaron schedules every minute of the day, and completely falls apart if there are disruptions to that schedule.  It is very difficult for our family, and my husband and I would like to be the ones to make the decisions rather than our 7 year old son, and we’re looking forward to this issue resolving.

Our conclusion is that our labor is not in vain.  We know Aaron has a future and a hope (Jeremiah 29:11).

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History is Happening NOW

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From the tribe of Issachar…All these men understood the signs of the times and knew the best course for Israel to take.” 

(1 Chronicles 12:32)

In the early days of my walk with the LORD, I was very curious about “End Times” (quotes used facetiously).  I was terrified about being “left behind,” and the series of the 1970-era Christian horror movies, Thief in the Night, scared the hell out of me.  Literally.  I was so freaked out about it all.  There was no way I wanted to be “left behind to face the tribulation.”  Then, at some point I came to my senses.  I thought, “Who cares if Jesus comes back pre-Trib, mid-Trib, or post-Trib…I want to know and be a part of what God is doing NOW in this day and age.  The future will take care of itself.”  I realized that if I was faithful today, God would be faithful for my tomorrows, no matter what I may have to face.

My purpose for this post is not to debate End Time doctrine, nor to engage in political debate, but to draw attention to a history changing event happening NOW.  One task I know I have from the LORD is to be a watchman on the wall for Israel—paying attention to what is happening in the natural and how the Holy Spirit is leading, and then sounding the alarm to bring attention to what is happening.  I was recently made aware of this history-changing event that will take place in Israel on April 23, 2015 that I am really excited about, and will be wholeheartedly participating in.  This is something very significant, and I pray that you will understand the significance and join in with this event.

This year, a Jewish organization in Israel, the Center for Jewish and Christian Understanding and Cooperation (CJCUC) is inviting the Christian community to join them on Israel’s Independence Day in reciting the Hallel—Psalms 113-118 in celebration of God’s covenantal love (chesed) for the Jewish nation.  For the first time, the Orthodox Jewish community is extending an invitation to the Christian community.

For many years, Christians have tried to extend a hand of friendship to Jews; however, the Jews were and still are very suspicious of our motives, and they have every reason to be suspicious due to the long history of anti-Semitic terrorism from the Church.  There is a long, painful history of forced conversions and baptism through torture, Inquisition, Crusades, pogroms, etc.  However, in our time, the tide is changing.

One of the greatest witnesses of CHESED (Hebrew for loving-kindness) Christians demonstrate to the Jewish people is the fact that they come in droves to visit Israel.  Each year more than a half million Christians from all over the world visit Israel.  Usually, the first time Christians visit Israel, they visit the key sites of Jesus’ life and ministry, follow the Via Dolorosa, and visit the empty tomb.  They go to connect with what God DID; however, what ends up happening is that they actually connect with what God is DOING in this day and age.  I can tell you that while it’s nice to visit the key sites of the past, it is so much more meaningful and powerful to connect with God’s heart in what He is doing NOW for the people and land of Israel.

God is still faithful to the covenant He made with Abraham, Isaac, and Jacob, and the Jewish people are astounded to see that Christians are repenting of past anti-Semitism, recognizing the errors of replacement theology, and embracing their rightful place alongside God’s chosen people.  Jews are blown away that more and more Christians are coming to Israel who are knowledgeable of Jewish and Israeli history, and are eager to learn more and become ambassadors for Israel in their home nations.

The CJCUC is the first ever Orthodox Jewish organization dedicated to building Jewish-Christian relations through studying the Bible.  The founder, Rabbi Shlomo Riskin was awarded the honor of being named the Ambassador for Jewish-Christian relations by Prime Minister Benjamin Netanyahu.  The executive director, David Nekrtuman, also served as a columnist for the Jerusalem Post Christian edition, served as the director of Christian affairs for the Consulate General of Israel in New York, and was instrumental helping to launch the Day of Prayer for the Peace of Jerusalem and other Christian initiatives resulting in millions of Christians praying and supporting Israel and the Jewish people.  He is currently studying for a Masters’ degree in Biblical Literature with a concentration in Judaic-Christian Studies from Oral Roberts University—yes, an Orthodox Jewish man is attending ORU!

For the first time, the Jewish community is reciprocating and inviting the Christian community to celebrate with them in appreciation for the overwhelming and heavenly directed love and unity shown to Israel by Bible believing Christians.  They joined us, and are now inviting us to join them.

So, the event is on April 23, Israel’s Independence Day, and we are invited to recite the Hallel (Psalms 113-118) at some point during the day. This is a day to set aside to celebrate Isaiah 66:8 with Psalm 113-118, and in order to understand the significance of reciting these Psalms on this particular day, I think it is important to give you a brief background of modern Israeli history.

 “Who has ever seen anything as strange as this?  Who ever heard of such a thing?  Has a nation ever been born in a single day?  Has a country ever come forth in a mere moment?  But by the time Jerusalem’s birth pains begin, her children will be born.”  Isaiah 66:8

70 AD—the beginning of the Jewish Diaspora (the dispersion, scattering). The Romans conquered Jerusalem, destroyed the Temple, and the Jews were driven out to the four corners of the earth.

Throughout the Diaspora, the Jews struggled to maintain their unique identity and uphold their traditions in the face of severe persecution and pressure to ditch all that was sacred and assimilate into the culture of the society in which they lived, all the while longing to return to their homeland.  If you want to gain insight into this, watch the movie Fiddler on the Roof.

God had a plan, and to achieve His plan, His modus operandi was, as always, supernaturally-aided human endeavor.  And in the late 1800’s, He found His man.

Modern Israeli history began with Theodor Herzl, a Jewish lawyer and journalist.  Born in Vienna in 1860, he was educated during a time of Jewish Enlightenment and initially embraced secular culture, and felt that Jewish people should assimilate into and embrace the cultures and societies in which they lived.  He held that view until he got his first real taste of anti-Semitic violence that erupted out of the Dreyfus Affair while he was living in Paris.  Dreyfus, a Jewish officer in the French military, was falsely accused of treason—targeted because he was a Jew.  When Herzl saw the injustice and the virulent hatred toward the Jews by French society, he realized his life’s purpose—to mobilize the Jewish people to establish a state of their own.

 “For I will gather you up from all the nations and bring you home again to your land.”  Ezekiel 36:24

Jews first began making Aliyah in the early 1900’s, during the rumblings of anti-Semitic violence in Eastern Europe.  These early settlers brought the land to life.  They drained the swamps, and cultivated the land so that even the deserts bloom.  They built cities, universities, hospitals, schools, and indeed had the entire infrastructure of a nation in place before World War II began.

On May 14, 1948, while five Arab armies were gathering, David Ben Gurion stood and declared the Independent State of Israel.  This was the day Isaiah 66:8 was fulfilled.  Twelve hours after this declaration was made, the Arab world declared war on the infant Jewish nation, and against all odds, Israel survived and thrived through four major wars and countless terrorist attacks.  Miraculous.  There’s no other word to account for how Israel triumphed during these wars.

There is a documentary series that is now available in its entirety on YouTube:  Against All Odds: Israel Survives.  This series outlines the historical events surrounding the birth of the Jewish nation and chronicles the modern-day miracles that occurred.  Indeed, there is no doubt that God still fights on Israel’s behalf.

With the destruction of the Second Temple, the exile of the Jewish people scattered to the four corners of the earth, trials and tribulations under foreign governments, and the near annihilation of Eastern European Jewry in the Holocaust, it seemed that Jewish history was coming to an end.  However, on May 14, 1948, God changed the course of history and the State of Israel was born in one day.  The religious establishment recognized that the restoration of Israel back to its homeland had to be acknowledged, the day was incorporated in to the sacred Jewish calendar (the date falls on April 23 this year) and Psalms 113-118—The Hallel, would be the national recognition of God’s providence working through His people.

So, I am saying a hearty “Yes and AMEN” to this invitation from the CJCUC, and I will be reciting the Hallel on April 23, 2015, and I invite you to join me.

113-CJCUC-DayofPraise-600WIDE

Idle Chatter from a 5 year old

Rambles

Last week I picked up my five year old daughter from school, strapped her in her car seat, and, as she usually does, she started chattering about whatever was on her mind.

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On this particular day, she was chattering about some of the different people she encountered at school, and she described them by saying their name, telling me about the color of their skin, and then based on the color of their skin whether or not she felt comfortable talking to them.  The word, “NO!” exploded out of my mouth.  We then had a conversation about how people have different skin color depending on where they are from, and it has nothing to do with whether or not we should be friends with them.  We need to decide who we want to be friends with based on how they behave and how they treat you.  She hung her head in shame, and I knew she was thinking about what I said, and I know we will need to have many more conversations like this.

Where did this come from?  Up until a couple of months ago, she never noticed people’s skin color.  When she would tell me about her day and the other children she played with, she always described them in terms of their behavior and how they treated her.  When did she start sorting people based on their race?  I know exactly where it started…when she learned about Martin Luther King, Jr. at school.  It was impossible to teach her why Martin Luther King, Jr. is so important without explaining racism.

Interesting, huh?  In learning about the man who declared, “I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin but by the content of their character,” she learned to judge people by the color of their skin.

Now, is she racist? Does she think that because she has white skin that she’s better?  Not at all.  I know she didn’t mean any harm, and she is very loving and welcoming.  And, you know the studies that were done years ago when an African-American child was asked to choose between a black or a white baby doll, and they chose the white one?  Well, my daughter’s favorite Disney Fairy is Odessa, and she loves the Disney Princess, Tiana…but she also loves all the other fairies of Pixie Hollow, as well as all the other princesses.

Disney-Fairies-Redesign-disney-fairies-34698208-747-748Tiana, the Princess and the Frog

Oh, I long for the innocence of when she didn’t see color, but now she does, and I pray that she will see the varied colors of people’s skin as beautiful.

This puts me in mind of another incidence of Idle Chatter in the car.  I was giving my friend a ride, who happens to be African-American.  I found it so funny when she blurted out, “I’m so tired of being around white people all the time!”  I laughed out loud, and she said, “Oh, Rebecca, I didn’t mean you.”  I consider that one of the best compliments I’ve ever received.  She didn’t consider me white.  She considered me Rebecca.

Idle chatter from my daughter.  Rambling thoughts from me.  Dreading the conversations when she learns about the holocaust and she realizes it could have been her, just because she has one Jewish grandparent.  Sigh…  God, give me wisdom, and fill my mouth with the right words.

Work Trip Saga…Waiting

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Each year I travel to attend an educational conference in my field. This year the conference is in San Diego. After weeks and weeks of arctic temperatures here in the upper Midwest, I was looking forward to the warm weather awaiting me.

The taxi arrived at Noon today. My flight to Chicago was scheduled to leave at 1:25 for a 5:20 connecting flight to San Diego. We boarded on time and settled in, only to have the captain announce there was a mechanical problem and he needed to power down and then power the plane back up. We waited. An hour later we deplaned while they continued to fix the mechanical problem.  Several passengers missed their connections, but there was still a chance I’d make mine. We reboarded. However, due to de-icing, being forced into a holding pattern above Chicago, then waiting for 45 minutes on the tarmac waiting for a gate to open, I did miss my connection. 

An agent told me that the 9:25 flight was completely booked but found another option. There was a flight to Dallas and a connecting flight to San Diego. I agreed to that. I found a kiosk and printed my new boarding passes and was delighted to find I was now booked in first class. 

I grabbed some Chinese food from the food court and headed for the gate.  I boarded and settled into my roomy seat in the first class cabin and waited. And waited. There wasn’t enough catering on board.  We waited. Catering arrived. We waited to be de-iced. The more we waited I realized that if I stayed on this airplane I would never make my new connection in Dallas. I thought I’d much rather be stuck in Chicago which is closer to home, so I got off the plane.  The agent booked me as a stand by for the 9:25 flight. So, here I am.  Waiting. 

Our Journey of Hope–The First Months

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DISCLAIMER:  The program outlined in this blog post was prescribed specifically for my son by the Family Hope Center‘s team.  I wrote some of the details for friends and family who wanted to know what we’re doing.  I strongly caution anyone from trying to implement these therapies without explicit instruction from the team at the Family Hope Center.  This program does work, so, please contact them and make plans to attend their 3-day parent conference.

We just passed the three month mark since beginning our Journey of Hope and the program outlined by the Family Hope Center.  We are seeing results, so although the program is demanding, we are motivated to continue.  My husband, Bruce, essentially put his life on hold so he can completely focus on working with our son, Aaron, while I work full-time.

Each activity is designed to trigger various areas of the brain and form new connections to promote healing.  There was a recent article in the Wall Street Journal reporting about new research that proves the brain’s amazing ability to heal through physical and mental exercise.  This is the hallmark of the Family Hope Center’s approach.  They operate on the premise that the brain can heal.  They spend time to teach parents how the brain develops, and we now understand that Aaron’s brain function is simply disorganized, and each of the therapies works to help his brain organize itself.  Here is the list of all we need to fit into each day:

Reflex bags–40 times per day.  This stimulates deep breathing reflexes which increases blood flow to the brain.  Once the bag is covering his mouth and nose and we notice him beginning to take rhythmic deep breaths, we set a timer for 30 seconds, then we wait at least 5 minutes in between.  Aaron finds this very pleasant and calming.

Crawling (commando style)–300 meters (working up to 500 meters).  We do this on a hard smooth surface, so he glides across the floor.  This is the therapy that Aaron resists the most, but he can get the distance done in less than 30 minutes if he focuses. This activity stimulates the brain stem, and there are important functions in the brain and reflexes that didn’t develop correctly in Aaron because he didn’t crawl enough like this as a baby.

Creeping (on hands and knees)–600 meters (working up to 1,200 meters).  We laid out a path of foam tiles in our basement.  Back and forth; back and forth.  This stimulates other areas of the brain stem that are vital.

Sample of what this looks like

Olfactory–9 different scents per day (3 in the morning, 3 in the afternoon, 3 in the evening).  His sense of smell is way off.  Smells that we find pleasant are repulsive to him, but he loves the smell of his sweaty shoe.  We find the same with his sense of taste.  He hates candy, cakes, cookies, ice cream, etc.  However, he loves the taste of fermented cod liver oil.  Is it any wonder that he was a very picky eater?  His eating habits are much better now.  Anyway, with each smell he needs to be able to identify it, and we are to watch for appropriate reactions to each smell.  Smelling also triggers the brain’s limbic system (people on the autism spectrum typically have under-developed limbic systems):

The limbic brain’s primary function is to warn us of danger. It is associated with autonomic functions such as arousal, motivation, emotion, sex, recent memory, smell and bonding. The olfactory pathway feeds this part of the brain directly.–Family Hope Center

Listening to a special music CD–30 minutes per day.  This helps him filter sounds.

Hyperbaric chamber–60 minutes per day.  By far, Aaron’s favorite therapy.  4 pounds per square inch of pressure increases blood flow and has been proven to grow new tissue.  We do this at the end of the day.  He goes to bed right afterwards and sleeps soundly through the night.

Hyperbaric Chamber photo 2

Nutrition.  We are following the GAPS diet.  His typical daily diet:

  • Breakfast–scrambled eggs and fruit
  • Snack–grapes and cheddar cheese
  • Lunch–organic, grass-fed beef patty and lentil soup
  • Snack–Larabar
  • Dinner–zucchini spaghetti and grain-free meatballs with a sugar-free pasta sauce
  • 24 oz of water per day (working up to this)
  • Supplements (fish oil, fermented cod liver oil, vitamin, probiotic…)

Tactile therapy (smooth and rough on skin)–10 times per day.  We still need to implement this.

Social behavior and boundaries (reduce repetitive play and sit quietly in church).  We notice a definite reduction in repetitive play, and we need to work on the “sit quietly in church,” though he did sit with me for 10 minutes last Sunday and did great!

Education (building vocabulary and language skills as a foundation for social communication)–We are seeing significant improvement with his social skills.  He carries on wonderful conversations and joins in with games and activities with other children.

In addition to all of this, Aaron takes karate lessons twice per week and weekly piano lessons.  Aaron also has a sister, Naomi, who is in pre-Kindergarten and involved with dance lessons.  Bruce takes karate three times per week and is involved with prayer meetings and worship gatherings at our church.  I work full-time, and I’m training for two half-marathons this year.  We lead a busy and full life.

Our next milestone will be Aaron’s re-evaluation at the Family Hope Center at the beginning of May.  They will repeat all the tests they did in November, then adjustments to his therapy program will be made, and we continue on.

The Impossible Dream: coping with impossible people

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Anytime people work or live in close proximity with one another there is bound to be conflict.  It would be nice if we could have a symbiotic connection, knowing that each of us needs what the others have to contribute; however, the reality is that we often find ourselves in situations that are cacophonous rather than harmonious.  Most of the time people can work through conflicts.  Sometimes, sadly, people find themselves at an impasse because at least one person refuses to compromise and find a solution that benefits all.

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I am cognizant of the fact that at one time or another that impossible person is me.  In those times I’m not open to suggestions or advice because as far as I’m concerned, I’m not at fault. I didn’t do anything wrong. I was falsely accused, and no one understands me. It usually happens when I go into a situation with a preconceived idea of how I want the interaction to go and the solution I want to arrive at, only to be unprepared for differing opinions and feeling like no one is listening to me…rejected.  There was also a time when I was confronted with something I did wrong, and instead of taking responsibility and asking for guidance in how I should improve, I became defensive and denied my wrongdoing while knowing full well that I was at fault.  Anyone else done that?  Sure you have.

I found this article on wikiHOW.com entitled How To Deal With Impossible People, and I can’t improve on what was said.  So, click the link and read their advice for handling conflict and long-term management of impossible people.  I also found a wonderful article on Chabad.org, The Mirror Theory.  The Baal Shem Tov (the founder of Hasidic Judiasm) theorized that when confronted by difficult people, the negative emotions we experience are due to the fact that we recognize those unfavorable behaviors in ourselves, and these are opportune times for self reflection and examination.

Some basic characteristics of impossible people are arrogance, fault-finding, and being antagonistic.  Therefore, I need to cultivate the opposite attributes of humility, being complementary, and kind.

Humility is having and demonstrating a modest estimate of ones own importance.  It’s not about putting oneself down; it’s simply being honest and recognizing ones own strengths and weaknesses.  This works wonderfully with being complementary and recognizing where another’s strength can supply my lack.  Finally, to be kind and act in ways that are good and beneficial to others.

I find it interesting that C.S. Lewis, in his book The Great Divorce, described hell as people living as far away from each other as possible with no interaction with one another.  God’s intention is that we should live together in families and communities.  Interestingly, in Israel there was a study that proved that people who lived on kibbutzim (communal settlements) had longer and healthier lives than those who lived in cities.  On a kibbutz, everyone owns everything and no one owns anything, and these communities were the backbone to Israel’s early survival and economic productivity.

So the age old question:

Get_252520Along

One of My Defining Moments

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defining moment

Three years ago I experienced a defining moment that altered me in profound ways.  That moment was when I crossed the finish line of my first marathon.  If there was ever someone least likely to accomplish this feat, it was me, and I crossed that finish line after most people had gone home and the race organizers were tearing down the scaffolding…dead last.

A lot of people would consider finishing dead last a shameful failure, and for a long time I was embarrassed to tell people what my finishing time was.  That was until I read a blog post by another runner who had finished that same marathon.  His blog recap of the race is pretty technical…describing his pace at each mile and his strategy for making his time goal. I found it interesting that as I read his account of his experience I was re-living mine.  He crossed the finish line in about 3 hours 15 minutes.  I did a quick math problem in my head to figure out how long afterward I crossed the line, and it was 4 hours later.  My official finish time was 7 hours and 13 minutes.  I wondered if he could have kept going at his pace for another 4 hours, and then it occurred to me that I accomplished something pretty special.  I didn’t quit, and I received the exact same medal and finishers shirt as the person who “won” the race.

I use quotes around the word “won” for a purpose.  Because even though I was the last person across the line that day, I have gained so much from that experience.  There is a boldness and a confidence in me that was unleashed, and I no longer struggle with self-doubt and depression.  I no longer shrink back from conflict.  I can stand and face any challenge life throws at me.  The most valuable lesson I learned is that in a marathon, as in life, there is no such thing as “last place.”  There are only “final finishers.”  And even though I was that final finisher I still accomplished something that very few ever do.

Back in October 2014 I received a phone call from the organizers of the Mankato Marathon.  Each year they create video featuring 3 runners who they believe have an inspiring and bold story to tell.  This year I was honored that they asked for my story to be included.  The video just came out today.  It’s about 6 minutes long.

Who Will Stand With Me?

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When I was in 8th grade, my English class read the play The Diary of Ann Frank.  The teacher assigned parts, and we read it out loud in class.  I was honored to read the part of Ann.  This was the first time I learned about the Holocaust.  The story gripped my heart.  Within the next year I read The Hiding Place by Corrie Ten Boom.  Throughout my teens and early adulthood I devoured everything I could to learn about what happened in Europe from 1933 through 1945.  I was particularly struck by the accounts of non-Jews who opened their hearts and homes and hid Jewish people at the peril of their own lives.  These heroes, the rescuers, are awarded the honor of being named as The Righteous Among The Nations, and it does my heart good to know that there were many who had the courage to stand in the face of evil and do the right thing.

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In times of conflict, people find themselves cast in one of three roles:  the perpetrator, the victim, or the bystander.  Most of us like to think of ourselves as innocent bystanders; however, there really is no such part to play.  Really, there are only two roles–perpetrator or victim.  If you stay silent you empower the perpetrator.

The only thing necessary for the triumph of evil is for good men to do nothing.

Edmund Burke

If I lived during the time of the Holocaust, what would I have done?  I had a profound experience when I first asked myself that question.  It was in the form of a prayer, “Lord, if the Holocaust were to happen now, do I have the courage and the strength of character…would I have hidden the Jews?”  God spoke to me, and what He said shook me to the core.  He said, “You’re Jewish.  You would have to be hidden.”  That never occurred to me.  While I knew my father was Jewish, it was never part of my identity.  In fact, per Nuremberg Code, all it took was for one grandparent to be Jewish for a person to be condemned.  It did not matter whether that person worshiped in a synagogue, a church, or anywhere.  If one grandparent was Jewish, that person is Jewish.

The fact of the matter is that this type of evil is operating in the world today.  Many people groups are suffering.  There are many accounts of heinous crimes against humanity all over the world.  Right now attention is on France and the terror siege that gripped Paris and the surrounding area.  How should I respond?  What should I do?

I am not anyone important.  I am a middle-aged working mother who lives in the heartland of the United States.  Nonetheless, there are organizations I can align myself with.  I can participate in social media.  I can write a blog (thank you for reading this, by the way!).  What I thought I should do is link to the various organizations I am aligned with, and tell their stories.  In this small way I am standing with those who are suffering, and hope that someone will stand with me.  Who will stand with me?

Vision for Israel (humanitarian aid)

Dry Bones campaign to Help Fight Antisemitism

International Fellowship of Christians and Jews (humanitarian aid)

Center for Jewish-Christian Understanding and Cooperation (scholarly activities)

Knesset Christian Allies Caucus (government)

Eagles Wings

The Day of Prayer for the Peace of Jerusalem

Caroline Glick (journalist)

Bridges for Peace

Hebrew for Christians

Hope Positive Africa (empowering women)

World Vision

…and there are many more organizations and individuals who are doing remarkable things to stand and ease the pain of those who are suffering.  The needs are enormous, but any little bit we can do helps.