The 40 year journey

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Moses probably has as much name recognition as Taylor Swift, across all continents and varying demographics.  That’s where the similarity ends.  He does not command her stratospheric popularity, fortune, and beauty, though some 3,000 years after his death movies are still made about his life.  The story of Moses’ life saved my life.  The drama, forces of good versus evil, fight for liberty all make for box office movie material.  But it is the one about God’s resounding goodness and greatness that speaks to me deeply.

It is hard to think about God’s goodness when raising a child on the autism spectrum.  It seems like an unrelenting journey, and as a parent, I am terrified that the window is closing in as he is nearing adulthood yet not nearly as independent as he should be.

My faith certainly offered some comfort, though intermittently, it didn’t offer answers so I stopped asking the questions. And at some point, I stopped praying as it seemed pointless.  Because all experts and medical professionals will tell you there is no cure for autism.  And God seems to agree with them.

It wasn’t until I studied the life of Moses in the Old Testament that I found hope, relief and yes, yes, yes, answers!  These are not the same as “answered prayers” – the way I had prayed for things to turn out.  I don’t care what popular culture has to say about religion or authenticity of the story.  I found hope and answers where no worldly doctors, (we went to psychiatrists, developmental pediatricians) therapists, psychologists (we tried psychotherapy, cognitive therapy) or gurus could offer. And it is my blog, so I get to say anything I want.

When the Jews fled Egypt, the most direct route from Egypt to Canaan (God’s Promised Land) was along the coast, along what is today called the Gaza strip.  It could have taken days or weeks, but God led the Hebrews a long way that took them 40 years after they had already spent 400 years as slaves in Egypt.  That is somewhat more than a generation, there must have been many who never saw freedom, who lived their whole lives as slaves, wandering what happened to God’s promise to Abraham, Isaac and Jacob. My first lesson is that God is taking me on a 40 year journey.  I am one of the Jews, and like them, God is using our hardships to work powerfully on our behalf.

It is estimated that there were 2 million people including women and children who left Egypt.  It was a terrible, difficult journey, way larger than the Donner party. We are talking a whole race of people and their livestock.  There was no humanitarian aid and human rights group advocating for them when they were pursued and slaughtered by enemies.  It was an exodus of a nation, on a scale unmatched by anything we are seeing today. They were counting on Moses, whose faith was being tested, as much as that of the people he led.  Yet on EVERY occasion God provided, He heard Moses’ prayers and his people’s desperate cries.  At Marah, where the water was bitter and undrinkable, God gave a decree: “if you listen carefully to the Lord your God and do what is right in his eyes…I will not bring on you any of the diseases I brought on the Egyptians for I am (Yahweh-Ropheka), the Lord, who heals you.” He made bitter waters sweet, he led them to Elim, where there were twelve springs and seventy palm trees.  It reminds me that even when I seem to be “in the desert,” God provides green pastures and sweet relief.  He wipes away the tears from my eyes.  The lesson for me is that the burden of my life’s journey is not on me, but on God.

I need to stop thinking about my destination, but live and trust daily.  My life has not gone as planned.  It doesn’t mean there is no plan.  Raising Jack is my 40 year journey, adventure – and God’s plan.

Follow me as I figure out what God’s doing with our lives —

 

Footnote: some information taken from Bible Study Fellowship notes

 

Taming the Worry Monster

frightened-childIt was my son’s psychotherapist who first identified Anxiety as Jack’s biggest problem when he was in second grade.  He disagreed with the teachers that Jack was ADHD, explaining that one of the reasons he couldn’t focus in school and was acting out when the smallest, seemingly inconsequential thing went wrong was that he is constantly living on the edge, his mind filled with fear.

 

In Kindergarten we should’ve seen the early signs when he was afraid to get up from the automated flush toilet because the noise frightened him.  In first grade, he was punished for constantly munching on some cereal which he would hide in his pockets, (we later learned that the munching was for self soothing), he had to be forewarned about fire drills and put on his noise cancelling head phones.  At birthday parties at Chuck e Cheese, my boy was crawling under the table screaming when Chuck E came around and sang happy birthday.  It was embarassing and worrying for us that my little boy was crying when other kids were having fun… His life was a constant, unrelenting stream of problems all linked to his anxiety which we didn’t understand at that time.  He travelled everywhere with his security “blanket”- the Star Wars and GI Joe figures were cute, and quite normal, but these were replaced by a spatula which he carried everywhere, even on 20 hour flights to Asia where it (literally) never left his side.  God forbid he were to lose that spatula, so that humble spatula became as important as our passports, safeguarded by two very vigilant adults.

I first read this article a year ago, written by an adult with autism.  http://www.psychologytoday.com/blog/worrier-warrior/201404/first-person-perspective-anxiety-and-autism

Dr Catherine Alvarez is a mathematician, and founder of Math Wizard, student of psychology, blogger, and homeschooling mom of two great kids.  She discusses anxiety in Autism, where she explains that anxiety can be consuming and handicapping, preventing a person from learning or even trying.  Before all else, comes the Acceptance.  I wished someone had told me this twelve years ago, as there was too much pain, heartbreak and judgement that could have been avoided.  

“It’s so important to deal with anxiety before trying to address other issues or expect someone to respond to teaching.”
 
Look beyond the child’s behaviors which often seem irrational, embarassing, inexplicable, socially unacceptable, and remember that you have a frightened child, unable to explain what is troubling him.  You can’t cajole or punish away his anxieties, but you can work with him to tame those worry monsters, slowly, one at a time.  You won’t be  able to tame all of them, but every tiny little monster you can tame brings them a little bit of comfort and safety, which then frees them to learn.
 

Teaching my Adult Son Life Skills (Part 1) …

…When he doesn’t have the “antennae”.

confusedmanMike (not his real name) walked up to receive his High School diploma, shook hands with the principal, and then promptly danced and jumped up the aisle on the way out. We danced with him in spirit, as it had been a terrible ordeal for all of us the last two years. Unbeknownst to us, our brilliant scholar and straight ‘A’ student had Asperger’s syndrome. I think everyone at the small private school was slightly relieved that he was not the Valedictorian, as his speeches could be random, unpredictable, and not germane to the task at hand. He could have just as well have talked about how to make butter at home, or given it all in Spanish, leaving most people scratching their heads. He had “melted down,” in his Junior year, and was misdiagnosed with depression. He been unable to formulate plans for after High School, and rather than let his talents go to waste, we (ridiculously) enrolled him in a local university with hopes something would inspire an interest, and he could find a niche in the world.

To make a very long story short, Mike could not adjust to college life, and in the second semester, isolated himself, then, dropped out. In the meantime, we had begun hearing about Asperger’s, and while researching it, the light bulb came on for my husband and me. The pieces totally fit. He finally saw a Psychologist, and, after extensive testing, she confirmed our diagnosis.

While knowing the truth, and struggling to grasp all its ramifications, we at least had our son at home, and in a safe place. We struggled with our fears, emotions and tried many interventions to help us figure out what to do: 1.) Regional Center (he had made it through High School – did not qualify) 2.) a social group for other “Aspies,” (he hated them and thought the facilitators were condescending), 3.) forced him to take at least one class at community college (he secretly went to a quiet area and played video games), 4.) a mentor (he despised him), 5.) some ABA at home, requiring him to get out of bed by 3 pm and to initiate a greeting, and finally, 6.) The State Department of Rehabilitation (absolutely clueless about autism spectrum, their only solution was for him to attend community college!)

canstock13508969All Mike really wanted to do was live on his own. We started from there. How do you teach a 20 year old, about the outside world, when he had never developed antennae, or even a curiosity about how things work “out there?” He did not drive, never mastered riding a bike, but he did not really think of himself as “disabled.” I really needed help, and again, investigated many avenues, but realized I would have to “invent the wheel”, and do it myself.

One of the best days of my life was when I discovered www.caseylifeskills.org. Although it was originally developed to assist foster children in Massachusetts who were about to turn 18 and leave the system, it provided an inclusive list of areas that needed to be learned, and also had an assessment for the youth to take, and for the caregiver to take. I took the test, and gave him the test to take. We were worlds apart, with him, of course, overestimating how much he was capable of doing. But at least I had a list– a place to start, and began to gather my materials.

With nods to Casey Life Skills, here is a list of areas that I used to begin teaching Mike to take care of himself. I am happy to report that as I write this, he has been living in his own apartment for three years now, and he is content. He is maturing, becoming his own person, and proud of being capable and self-sufficient. When he is content, I am content.

In further blogs I will break down these areas in more detail, in hopes that other parents will not have to struggle like I did. I do not pretend these are perfect, and I’m sure many can find holes in the material. My desire is for others to use these topics as springboards and support for your own customized life skills curriculum for your loved ones. Every person will have to live somewhere when we are gone. The terror of that thought motivated me to teach my son to be as independent as he could possibly be. No matter if your child will live with family, in a group home, or by himself, this outline can give you a way to organize your training no matter what the level of ability. And please, check out

Casey Life Skills online, and use their free materials and worksheets if they fit your situation. It’s never too early to begin teaching your children how it works “out there.”
  • Self-Care
  • Communication
  • Housing and Transportation
  • You and the Law
  • Money Management
  • Community Resources
  • Home Care
  • Food management

Note* There are other resources online that give assistance with Career planning and Workplace Skills. I have not included this in my list. Mike is on Disability, and is not able to function in the workplace due to social and cognitive disabilities, and “delayed sleep syndrome.”

My Brother Andrew

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I am 17 years old, and a junior in high school. I live with my brother, Andrew, who is 21 years old. Andrew is autistic.  Watching him grow up has been great because I have seen him grow physically and mentally. There are times where you think the situation will not change, such as occasional fits, then he grows out of it.

I was inspired to make this video because of the person Andrew is. He is a good person, Autism or not. He is who he is partially because of his Autism, It should be motivational to others because you can see his growth, and that should give hope to those who have a loved one with Autism, knowing they will grow up and mature.

It made me very happy to put this video together and get it into the eyes of others. Not so they know just who Andrew is, so they know how Autism affects people. Autistic people are not less than anyone else, just different. It can be challenging for me and my family sometimes to watch him struggle but we motivate him to overcome his obstacles. Having a sibling with Autism can be difficult, but it made me the person I am. He has helped me become a very patient and understanding person. I made this video just over a year ago. It happened to be Autism Awareness month. I was not assigned to make this as a school project, I simply wanted to educate people about what Autism is.

People should be aware that people with Autism are still people, and can grow and overcome challenges just as much as anyone else. They just need a push in the right direction, and push them as much as they can take it. If they want to improve, it will happen.

The challenge for me in producing this video was how I was going to get the message across. This was the first video I have made about Autism. This is for Andrew, and everybody else with an “andrew” in their lives.

Also Read: 10 Things Every Child with Autism Wants You to Know

Prominent Genetic Scientist and Pediatrician shares Findings on Causes for Autism

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There is so much information about autism that it’s often overwhelming, so I try to post content that I think are differentiated, and not likely found on other autism websites.  This presentation made by Dr Wendy Chung at a recent TED 2014 conference, offers the clearest, best explanation yet on a complex subject : What Causes Autism?

Dr Chung, pediatrician, geneticist and researcher, is Director of the Clinical Genetics Program at Columbia University Medical Center in New York as well as the university’s fellowship program in clinical and molecular genetics. She is the principal investigator of the Simons Variation in Individuals Project (VIP), launched by the Simons Foundation, SFARI.org’s parent organization. The project aims to identify and study individuals with an autism-associated deletion or duplication on chromosome 16p11.2.  Of her impressive bio, https://sfari.org/news-and-opinion/investigator-profiles/2011/wendy-chung-genetic-sleuth-is-advocate-for-families the descriptor I like best is “genetic sleuth” as here, she articulates scientific findings in layman terms on what causes autism.

“Autism isn’t a single condition. It’s actually a spectrum of disorders,” says Chung. “And like it is a spectrum of disorders, it has a spectrum of causes.” For a summary, check out this link http://blog.ted.com/2014/03/20/what-we-know-about-autism-wendy-chung-at-ted2014/

This is a MUST VIEW video for not just parents of ASD kids, but anyone who seeks to understand children with this condition, because most likely, you would know such a child.  Each of us can make a more tolerant and helpful environment for them.  Within my own tiny social circle, I know of ten boys/ young men, and the number keeps growing, because yesterday there were nine.

Also Read : Temple Grandin : The World Needs All Kinds of Minds

 

10 Things Every Child with Autism Wants You to Know

 

canstockphoto18170887Someone sent this to me, unfortunately, I don’t know the source to credit this.  In any case, I hope you can share it, learn it, and embrace the child living it. GetInline

 

Also Read :

 

 

“The Reason I Jump” – The Inner Voice of a Thirteen-Year-Old with Autism

reason i jumpWe had endured weeks of frustration trying to get our son to join a new boy scout troop.  It is always a test of will and patience whenever we try to get “Jack” to do something different, new or slightly unfamiliar.  I finally reached my breaking point one day, yelling at him when he started crying, and for the first time in his thirteen years, in a couple of simple words, he painfully offered me a glimpse into his trapped mind :  ”mom, if only you live in my body”.

You think that as a mother, you are aligned with your child’s emotions, yet you might miss it inspite of your most intimate empathy.   That was the case with me.

Couple of months ago, my mother-in-law gave me a book she read, The Reason I Jump.  I believe she had to find her path to living with us, understanding the emotions and behavior of our son.  The book is written by Naoki Higashida, when he was thirteen, using an alphabet grid to painstakingly construct words, sentences and thoughts that he is unable to speak out loud.   It offers startling insights into the autistic mind.  He answers questions such as : Why can’t you have a proper conversation? Why do you ignore us when we’re talking to you? Why do you do things you shouldn’t even when you’ve been told a million times not to? Why are you obsessive about certain things? Why can you never stay still?  Do you find childish language easier to understand?

Higashida answers these and many other questions with honesty, explaining what goes on inside his autistic mind.  A book to be shared so as to help your family and friends understand your child a little better.  Because then maybe, the world will be a kinder place to them.

 

Also Read : Temple Grandin, “The World Needs all Kinds of Minds”

Temple Grandin’s Talk, “The World Needs All Kinds of Minds”

428px-TempleGrandin-2 I recently found this presentation that Temple Grandin made at a TED conference.  TED is an annual conference of the world’s leading thinkers and doers, bringing together people from three worlds : Technology, Entertainment and Design.  It is described as a “4-day journey into the future, in the company of those creating it.”

The talk was done in 2010, but still compelling and very relevant, nonetheless.  She discusses how the autistic brain works, and why it may be a gift.  While my son will never be a Nicola Tesla, this talk is authentic, personal, laced with Grandin’s dead pan humor and gives me comfort and a tiny measure of hope.

Grandin : my mind works like Google for images

CNN interview, Why Autism is a Gift :  http://www.cnn.com/2010/OPINION/03/01/temple.grandin.ted/index.html

From Twinkle to Bach – Learning Music the Suzuki Way

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Dr Suzuki from Suzuki Archives

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Strings by the Sea Camp, San Diego

When “Jack” was a toddler, his dad took him religiously to those popular music appreciation classes, then we tried drums since he had natural rhythm, but the teacher with the loud demeanor and Mr Magoo glasses intimidated him.  So we tried piano lessons, but he could not sit still for more than 15 minutes and after six months, the piano teacher dropped us with some vague excuse about scheduling.

Violin was never our instrument of choice, because it seems too complex for our son’s short attention span.   We kind of just “stumbled” on it after someone mentioned that her ADHD son learned the piano with the Suzuki method and suggested we try any instrument if I can find a Suzuki teacher.  We found a violin teacher, and “Jack” had his first violin lesson when he was almost nine. Violin and him seemed a very unlikely match, he was reluctant and we were not optimistic.  Now, four years later, he’s still playing the instrument and somewhat enjoying it.

The Suzuki method was developed by Dr Shinichi Suzuki, based on the mother-tongue approach, where children learn music much like they learn their mother tongue – hearing the words hundreds of times and repeating them.  Children learn to speak before they learn to read, so why should music be different.  ”Jack” has perfect pitch, but poor attention, so replicating sounds and notes are easy for him where it would have been impossible for him to read and follow notes while working on fingering and bowing.  For more information about Suzuki music, check out this blog post by his teacher, Danielle Gomez http://rethinkinggenius.blogspot.com/

Inspite of his anxiety and stage fright, he does two solo recitals a year, an annual concert at the Del Mar Fair in San Diego, and a holiday recital every December for a retirement home.  He just attended his fourth violin camp, where they were immersed in a week of practice, working on techniques, repertoire, fiddling, jazz and orchestra music.

This is his musical journey.  He’s no protégé, we fight about practices, he can’t do jazz because it’s “chaotic”, and unstructured, but he can harmonize, and his repertoire has expanded to classical pieces played in movies and concerts - such as Minuet by Luigi Boccherini, in a recent BBC movie, Quartet, produced by Dustin Hoffman, and Humoresque by Dvorak, exquisitely rendered by Itzhak Perlman (whom he’s trying to mimic) and Yo Yo Ma.

Sight reading music is a challenge, and he struggles with musical expression like tone and dynamics, as these don’t come naturally to him, but he’s making music, and having fun, most of the time.  So while the best laid plans might have to be abandoned, if you suspend skepticism, your child could sometimes surprise you.  Ours is an accidental violinist.

Also Read: Lessons from Summer of 2012

 

Should my Child Take a Vacation from Medication?

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Ah, the joyous sounds of summer: giggling, splashing pool water, crickets chirping, and the snoring of exhausted children. Unfortunately, we’ve also experienced: the bickering among siblings, meltdowns due to late night playing, and frustrating outbursts when schedules are unpredictable. So, how do we prevent the latter? Do we maintain medication rituals or take a temporary break during the summer? Having an ADHD child myself, I have had to make this decision more than once.

I think we need to consider the reasons why we would consider having our children abstain from medication. Here are a few:

1. We feel guilty that they take medication. Most of us have received unsolicited (and often unhelpful) advice that we shouldn’t have our children on medication. Well-meaning friends and family are not usually educated about ADHD and spectrum children, their needs, and possible treatments. It’s easy to feel guilty in this world of “green” and “whole foods.” Of course we’d rather not have our children on medications, but if the medication is HELPING, we need to do our best to ignore ignorant comments.

2. Our children are losing weight. A common side effect of stimulants is weight loss. Our family has dealt with this issue. We now give our child an Ensure every night before bed. We also allow him to eat snacks after dinner once the stimulant has worn off. If your doctor is concerned about weight loss, and your child is not growing, then under your doctor’s supervision, a consideration of going off medication is absolutely understandable and recommended. Otherwise, if you can maintain your child’s weight and growth, medication can be a lifesaver.

3. The medication doesn’t really help. There are certainly children, and adults alike, that cannot tolerate medication. Some people try every medication available, but to no avail. If the medication doesn’t work, then definitely don’t force the issue! When the medication helps, it is obvious in your child’s behavior, and the harmony in your family. If not, ditch it! (By the way, if you are frustrated with the medication, talk with your doctor. If your doctor isn’t helpful, maybe it’s time to find a new one.)

4. Your child is not in school, so why would they need the medication? The ADHD brain has an altered frontal cortex, which regulates such things as organization. The frontal cortex is slow and needs to be stimulated in order to function properly. Stimulants (and other medications like anti-depressants) can help children focus, remain, calm, stay socially interactive, and learn the ability to organize. They need these functions throughout the year, not just during school. You could consider lowering the medication, but your child still needs to be able to function and interact at home, summer camps, and with family and friends.

I have focused on stimulants, as they are commonly used for ADHD. Other medications like anti-depressants and mood stabilizers should NOT be altered without the supervision of your doctor. These medications were not intended to be temporarily decreased over the summer, and you need to be extremely careful in altering the dosage. Always consult your doctor before making any decision.

Whether you decide to have your child stay on their medication, or take a temporary break, YOU know what is best for your child. When judgmental people make comments, confidently state that you are happy with your choice and the success of your child is evidence that you’ve made the right decision. What can they say to that? (And frankly, why should we care what they think?)

Enjoy your summer, and stay true to your own child’s needs and your parental decisions. You are capable of knowing what brings the most happiness to your family.

Also Read : Lessons from Summer of 2012