I can remember when my parents announced that we would be leaving our small church in Eastern Washington to move back to my father’s home town in Oregon.  In spite of my dad’s social problems, my parents had managed to build a successful church in Pasco Washington.  But it was wearing my father down emotionally, and he wanted to go back to school to further his study of theology and become a teacher at a Bible college or seminary.  He was a talented theologian, but he really struggled with providing pastoral care and counseling to his parishioners.

The relocation, followed by a stressful job search, caused my father’s first emotional breakdown.  He was hospitalized then, and misdiagnosed with Manic Depression.  The doctor prescribed Lithium to prevent another manic episode.  The Lithium did not prevent his second breakdown, which occurred five years later when he was going through a divorce.  Furthermore, the experience was so embarrassing and devastating for such a highly sensitive and intelligent man, that he withdrew even further into his depression and anger.  My father lived and died too soon to receive the help he needed for his autism.  (See “Autism in Family History” and “Asperger’s and Spirituality”.)

Many individuals who are experiencing autism or Asperger’s struggle with emotional regulation issues.  Depression, anxiety, and anger are common problems.  Medications and counseling can be a tremendous help (See “Medications”), but the best treatment is to provide the support that these individuals need in the first place.  Public schools are growing in their understanding of these children’s unique needs, but what happens to these individuals when they reach adulthood?

People who are experiencing Asperger’s or autism need training in social communication. They need instruction to enter into new social situations successfully. This becomes especially important as individuals transition from school, to universities, and then into the work place.  Many young adults with ASD get lost in these transitions and never live up to their potential. Furthermore, lack of success can exacerbate emotional problems. They can also still benefit from sensory integration training, occupational therapy, counseling, and support groups.   If all of these services are in place, then symptoms of anger, depression, or anxiety will diminish.  Unfortunately, services for adults are very difficult to find in most communities.   Read the attached article to see one successful approach for supporting young adults who are experiencing ASD symptoms.   Local autism alliance expands as need rises

Since my son has been diagnosed with Asperger’s Syndrome, I have spoken to many parents of special needs children.  A common theme of dissatisfaction has emerged from these conversations.  Most parents express frustration with the lack of appropriate services provided for their children by the school.  Because of this (and other factors), I was very nervous about my son’s IEP meeting (See The “Individualized Education Plan”).

However, I am happy to report that this meeting could not have gone better!  I left the school in a daze because I was so relieved.

I believe the single biggest factor for success is effective communication.  I was afraid to speak during the meeting because so many of the issues surrounding my son’s diagnosis are still emotionally charged for me.  I didn’t trust myself to remain calm and composed.  So I wrote everything down in advance.  I gave the special education teacher a copy of the medical report, a description about my son’s last experience in school (see “What to do about bullies?”) and a detailed list of accommodations that I thought my son needed.  I am going to include my list below for any parents of children with autism.  However, keep in mind that this may only be a starting point for another child.  Your child may need more or fewer accommodations than I requested for my son.  Still, I was given every single thing that I asked for, and I left wishing I had come with an even longer list!

Possible Accommodations

Impaired Executive Function

1) Written cues for instructions work really well for our son.  A checklist for trouble spots works well too.  Ex.  A checklist of things he needs to do to get ready to go home.

Communication

1) Touching him on the shoulder gently to get his attention helps him to focus in.  Asking him to repeat back instructions works well too.

2) Speak clearly and as literally as possible to make sure he understands.

Sensory

1) Allow gum chewing during class work times.

2) Deep pressure breaks.  (Erase chalk board, carry a stack of books to the library, etc.)

3) Encourage him to practice deep breathing techniques when he feels overwhelmed.

4) He needs to be on a keyboard during writing time.

Slow Processing Speed

1) No timed tests.

2) Remove time limits from standardized tests.

3) Cut down work or allow more time to finish tasks.

4) Give advance warning and extra time to clean up, prepare for transitions, etc.

Social Accommodations

1) Peer training for his classmates.  (See “Support through peer training”)

2) Buddy system during tricky social times like cooperative learning?

3) Assistant help during recess time to help him practice the social skills he is learning.

The rest of the IEP team had some great ideas as well, and the actual list of accommodations for my son is longer than this one.  Also, as I learn more about autism, I find that I can think of more ideas which I may want to add to his IEP later.  Keep in mind that the parent can call a meeting at any time to change the existing IEP.

I first started my teaching career in a small town in Southern Oregon.  I could see into Northern California from my back window.  I had a perfect view of Mount Shasta, and I longed to climb it (having no idea how challenging that would be).  Tom, who I was team teaching with at that time, was an experienced mountain climber, and he offered to guide me to the top.  He also pointed out Misery Hill, which I could see from my window as well.  He explained to me that Misery Hill was preceded by a false peak.  Climbers thought they were going to reach the top, only to find this last steep glacier stood between them and their goal!  (Even though I knew about this false peak before I attempted the climb, I still sat down in the snow and cried like a baby when I reached it.)

So here is what I learned when I climbed Mount Shasta.  I hate mountain climbing!!!

Still, it gave me the perfect metaphor for the grieving process which I am going to share with you today.

Tom taught us how to conserve energy during our climb by digging the heal of our boots into the snow to find a firm foothold, stepping up, and then resting for a second before repeating the same process with your other boot.  Step (crunch) rest, Step (crunch) rest…A monotonous process… which would take long enough by itself if you could simply ‘step rest’ your way up the mountain without finding any obstacles in your path like deep snow, overhanging rocks, false peaks, etc.  No such luck.  Just when you thought you could tolerate the boredom of the climb, the pain in your body, the lack of oxygen in your lungs, or the boots that felt like cement bricks on your feet, you would encounter an obstacle that felt insurmountable!

And that is what grief feels like…The easiest stage is of course denial.   “This isn’t happening”  “I can do this.”  “It’s not such a big mountain after all.”  That’s when all of your friends and family members comment on your bravery, “what a strong and incredible person you are”.  Then you begin to climb the actual mountain to reach the peak, which is my metaphor for acceptance.

The overwhelming feelings of grief come and go, but they always catch you by surprise.  They do not come in neat and predictable steps, and they can reoccur (at least this has been my experience.)

Grief is also a lonely climb.  You may have climbing partners, who are seemingly climbing the same mountain by the same route, but the experience is different for each individual and the helpful conversations are few and far between.  Mostly you climb in silence, too tired to try to support one another.

But once you have reached the pinnacle, and have accepted your new reality, then you can help other climbers who are grieving a similar loss.  You find yourself equipped with the appropriate amount of empathy and understanding to say the right words or offer emotional support.  It is here that your former grief becomes a type of ministry to others, a beauty from the ashes.  And it is here that you find you are actually a better person having completed the climb.

I thoroughly enjoyed Andy Andrew’s book, The Noticer. The story opens with a personal account by the author. He is a young man who has found himself grief stricken and homeless. Along comes a wise old sage, Jones, who helps Andy get back on his feet. Jones gives him simple yet profound advice that brings Andy the perspective he needs to live life again, after his grief.

“The situation in which you find yourself is fraught with difficulty, yes. It is also piled high with benefits…Remember, whatever you focus upon increases.” (Jones, page 13)

As the story unfolds, Andy meets many other people whose lives have been impacted by Jones. Jones helps a crooked business man turn honest; a middle aged couple save their marriage, an old man transition from life to death, and an elderly woman find the courage to continue living.

“In desperate times, much more than anything else, folks need perspective. For perspective brings calm, calm leads to clear thinking. Clear thinking yields new ideas. And ideas produce the bloom…of an answer. Keep your head and heart clear. Perspective can just as easily be lost as it can be found.” (Jones, page 154)

I strongly recommend “The Noticer” for anyone who could use a little perspective in their lives.

To find about more about “The Noticer Project” visit http://www.thenoticerproject.com

Our little boy has always struggled with anxiety. However, it wasn’t until he started school that it escalated to a critical level. (See “What to do about bullies?”) The psychiatrist who helped our son recommended a small dose of Fluoxetine. Since our little boy was only seven years old at this time, we were very concerned about the use of medication. The psychiatrist insisted that this was necessary, and that we needed to trust him.
Had there been any other way to help him, we would have refused such measures. Still, the medication has so significantly improved our child’s quality of life that we can’t argue with the doctor’s decision. (See “Goodbye Good Friend.”)

Several months later, I enrolled in a class at the University of Oregon titled “Overview of Autism”. The course was reading and writing intensive and packed with learning. For one of our assignments, our professor asked us to research and complete a pharmacological matrix including every possible drug prescribed for children with autism. Students were asked to document the reason for use, dosage, possible side affects, year approved for pediatric use by the FDA, and recommended accommodations for the classroom. Twenty hours and eight cups of coffee later, I had the thing completed to the best of my ability. The assignment was a scary and confusing maze, which I believe to be the whole point. It was a great simulation of the frightening decisions parents have to make so often for their children with ASD. Medications can be a life saver, but nobody wants to experiment with their own child. And most of these medications have not been approved for pediatric use by the FDA.

I can still clearly remember the day my father baptized me.  We stood in a real river, with my father’s parishioners lined up on the shore to watch.  I don’t remember exactly how old I was at the time, but I know I couldn’t have been older than seven or eight.  Still, I understood the significance of what I was doing because my dad had explained it to me so explicitly.  He then asked me to proclaim my faith out loud, to our audience on the shore.  I was nervous, so I mumbled my beliefs under my breath.  My father gently corrected me.  “You need to tell them Kristine,” he said as he motioned to the shoreline.  I looked up and bravely proclaimed my faith in Jesus.  And then my father fully submerged me under the water and lifted me back to my feet.

My father was a brilliant social misfit, an “autistic savant”.  (See Autism in Family History.)  He once had his IQ measured in the 150 range.  He taught himself Greek and Hebrew, and could translate the Bible from its original language.  He was an absolutely amazing Bible teacher, and he had the pure faith of a child.

Years later, after my dad had been misdiagnosed with a mental illness and my parents had divorced, I questioned God’s existence.  My father had more reasons to denounce God than most people do.  His life was hard, and he never found the help he needed.  Yet his faith was solid, and he dismissed my unbelief with the wave of his hand. He always knew the correct scripture to soothe my doubt.

My father grew ill during my college years, and I was there with him when he went from this world to the next.  He faced death like he faced life, with faith.  There was all the proof of an omnipotent God I could ever ask for.

Just as I was once impressed with the childlike faith that I saw in my father, I am impressed with the spiritual maturity I see now in my son.  He asks questions and understands spiritual theology well beyond his years.  I am unsure exactly what causes this spiritual insight in people with Asperger’s syndrome.  It could be the tendency to take things literally or to think of life in black and white terms.  It could be that faith is refined through hardship and suffering.  I am uncertain of its cause, but grateful to have been blessed twice now with a true interpretation of God and of life.

In his book This is Your Brain on Joy, Dr. Henslin provides practical tips to help people regulate their emotions and promote a healthy brain balance. Dr. Henslin has had extensive experience using SPECT brain imaging to help people who weren’t making progress through psychotherapy. These scans can actually pinpoint where a brain may be dysfunctioning so that the correct medication or treatment plan can be prescribed.

However, Dr. Henslin further asserts that there is no such thing as a perfect brain, and we could all use a little help being happy sometimes. His book includes a checklist that readers can fill out to pinpoint potential problems. From here, readers could simply read the chapters that may be relevant to them, or they could read the book as a whole.

My favorite section is chapter five, where Dr. Henslin describes “Joy Boosters”. He categorizes these boosters into three parts: First, enrich your outer world through, beauty, music, or smells. Secondly, enrich your inner world through movies, books, prayer, or meditation. Lastly, enrich your body-mind chemistry through nutrition and exercise. He expands on these three areas throughout his book with specific strategies that may help with anger, depression, anxiety, ADHD, etc. His advice is extremely practical and easy to apply while remaining scientifically based. I found his joy boosters to be very helpful, both personally and as a parent.

Every spring my kids and I incubate and hatch chicken eggs.  It is our Easter tradition.  When I first started hatching eggs, a farmer told me that it is very important that the chicks break out of the shells completely on their own.  It strengthens them to peck their way out and prepares them for survival.  This was a good warning our first year, because it took over twenty-four hours for a few of the chicks to finally make it out of the shell!

However, we ran into a problem our third year of hatching.  One of the chicks pecked and pecked with its egg tooth and simply could not break free.  Eventually it stopped pecking, and it stopped peeping.  The kids and I grew more and more concerned.  Finally, I got on the web and began to look for information on how to help this chick.

I discovered that sometimes if a chick has trouble positioning itself for hatching, it takes too long, and the membrane between the chick and the shell hardens.  This makes it impossible for it to break free.  The chick will die if it is not helped out of its shell.  We were further instructed to soften the membrane with a warm wet wash cloth and gently peal it away.  My son, who was seven at the time, helped me apply the wet washcloth and break the shell and membrane away from the chick.

The chick was a light blue color and was very beautiful.  We didn’t know if he would survive at first, but he did finally gather enough strength to walk, and then to drink and eat.  He grew to be a very ornery rooster, strong and healthy.

It’s so tricky sometimes knowing when to push and when to support our kids.  There are so many opinions out there about what ‘all’ children need, so many ultimatums.  But some kids are special.  For them we sometimes break the rules and trust our instincts.  Yet they still stand a chance to grow and go on to do great things.

Our son has loved animals ever since he was a tiny tot.  He could sort and classify all animals into their proper genus and species by the age of four, yet he was afraid to touch, pet, or hold all animals.  It was truly a love affair from a distance, a case of unrequited love.

Last year, with a small dose of Fluoxetine and some deep breathing techniques, our little boy began to overcome his fears one by one.  It was amazing to watch him begin to enjoy life like other boys his own age.  He held his pet hamster for the first time and even let her crawl up his shirt sleeve and onto his bare skin!  He pet dogs for the first time, and even held his leopard gecko and some snakes and tree frogs.  It was truly amazing!

Yesterday our little hamster friend passed away.  We knew it was coming.  She was at least two and a half years old, which is a good long life for a hamster.  She was very elderly and was becoming less and less mobile.  Our son knew it was coming too, and we were bracing ourselves for this loss.  Sometimes these emotional issues can be very trying for a child with Asperger’s Syndrome.

He handled it bravely.  He came out and told me she had died in her sleep.  We prepared a little cardboard casket for her, and the kids filled it with Valentines cards, and a few of her favorite possessions: her feeding dish, and some toys.  We dug a hole in the back yard and buried her.  Our whole family held a little hamster memorial service complete with Bible verses and some memories.

My daughter found a brick that would make a perfect tombstone, and both of our kids surrounded her tiny grave site with flowers.  We will remember her always as the tiny animal that helped our son enjoy his greatest love, the world of animals.

In my years as a classroom teacher (before I became a mother myself), I believed strongly in mainstreaming children with disabilities into the regular education classroom. To support my philosophical stance, I was always the teacher who volunteered to have these children placed in my classroom. I discovered that a few months into the school year, I would have the tightest knit most compassionate little group of students you could possibly hope to find. Children can be wonderfully empathetic or unbelievably cruel. I think it really depends on the training and guidance that they receive from the adults in their life. I expected them to be kind, and they truly rose to my expectations.

My personal prayer is that my own willingness to give and to adapt will come back to me now ( a good measure, pressed down, shaken together, and running over…Luke 6:38  ) as I prepare to put my own special needs child into a regular education classroom. But I know that the only way this can work is if my son’s peers are educated about his disability so they will be willing to tolerate his differences.

I am sure there are many ways to do this, but my favorite approach is through children’s literature. Children’s author Kathy Hoopmen has written several short children’s novels in which the protagonist has Asperger’s Syndrome. (See my book shelf for titles.) She does such a wonderful job of explaining the disability through her stories. I would recommend any of her books to read aloud to students who have a peer with Asperger’s Syndrome or high functioning autism.