Posted in Present Day

Interview with an Aspie (Part One)

Are you curious about Asperger’s from an insider’s perpective? My son, Brian (now 22) sat down for an interview and answered questions submitted by other parents and friends. E.g., How did he perceive growing up Aspie? What was most difficult? His greatest triumph? His thoughts are candid, sometimes heart-breaking, and always honest.

Candid conversations with Brian and Mom, Cindy
Posted in Present Day

Running into Sanity

“Previous studies carried out in Euro-American populations have unequivocally indicated that psychological disorders of the CASD (caregivers of children with autism spectrum disorder) are marked with high levels of stress, anxiety, and depression”.[1]

Cerebrun with Brian and Evan

This certainly proved true for me.

At around age 28, I had taken up running as a means to quit smoking.  I’d tried quitting a zillion times before, but eventually with the combination of the nicotine patch and running, it finally stuck.  I’d rightly deduced that I couldn’t run and smoke simultaneously, and running kept my lungs occupied while providing endorphins to push me past the pain of quitting. 

The running bug more or less stuck with me over the years, and after Brian was born, I pushed him along the trails in my super cool new jog stroller.  When Evan came along, we purchased a double jog stroller, and the two of them were my running companions.  This happy time was “BASDD” – before the ASD diagnoses.

AASDD, after the ASD diagnoses, life of course, changed dramatically, and running took a back seat to other more urgent demands. A tsunami of frustrations and struggles marked our activities of daily living, and I found myself dropping into depression.  I worried constantly.  Would Brian survive his childhood without hospitalization or jail?  Would Evan ever get that light back in his eyes…the connectedness and loving gaze from his early childhood days?  Would my marriage survive?  Would we be able to afford all the therapies?  Would the school system provide the services the boys desperately needed?

People gave me unsolicited, well-intended, but ultimately useless advice that left me feeling like I was doing it all wrong.  Their neurotypical kids with their time outs and reward charts for good behavior didn’t fly in our world.  We were a traveling circus of meltdowns and raised voices, and were “stared at” in the finest establishments, grocery stores, restaurants and malls in Atlanta.  For the record, I hate being stared at! 

When an 8-year-old Brian experienced his sensory meltdown, slapped the headmaster, and was subsequently expelled, the painful one-two punch hit me hard.  I felt embarrassed at my out-of-control son, and it was especially difficult because I worked in the admin office at the school. 

I quit working for a time to homeschool him and sank further into depression.  But even in the months leading up to that fateful transition, the demands of raising two boys on the spectrum had me feeling very down.  I would find myself weeping uncontrollably.  I didn’t sleep well and was tired all the time.  I didn’t want to spend unstructured time around others, preferring to be with my boys or alone.  The sadness and isolation became worse as I missed my wonderful co-workers and mourned losing my beloved job.

Rebel Race with Brian

Even within the autism community, we had our outcast moments.  I recall one such stressful episode.  Members from our autism support group were on a field trip to a bouncy house play area.  As part of the precautionary measures, all participants had to view a safety video.  Afterwards, the employee administering the safety briefing randomly asked the kids questions to test their understanding.  The son of our autism support group leader was asked a question, and didn’t respond.  My Brian with Asperger’s, in an attempt to be helpful, piped up that the kid wasn’t answering because he had autism.

It was as if Brian had simultaneously cussed out and slapped the kid’s mom.  She was angry and shocked and quite upset.  Apparently in her household, the “a” word wasn’t discussed, but that genie wasn’t going back into the bottle.  Brian had let the cat out of the bag, and she was livid.  Unfortunately, our relationship was never quite the same afterward.

Over the years, I met with psychologists, psychiatrists and therapists, and played guinea pig in an attempt at finding the right balance of anti-depressants and anti-anxiety meds.  As much as I didn’t want to need them; time, and repeated mental smackdowns convinced me that wishing it weren’t so…didn’t make it not so. 

Undergoing these years of chronic stress, loneliness, anxiety, fear, and doubt was life changing, and as it turns out, “brain changing” as well.  In a study published in Molecular Psychiatry, researchers found that chronic stress results in long-term changes in the brain. These changes, they suggest, might help explain why those who experience chronic stress are also more prone to mood and anxiety disorders later on in life.  Stress might play a role in the development of mental disorders such as depression and various emotional disorders.[2] And raising ASD kids is one of the most stressful parenting circumstances. 

Wipe Out Run

On the other hand, in a study, published in the journal Neurobiology of Learning and Memory, researchers found running prevents stress from wreaking havoc on your brain—particularly on the part tasked with learning and memory.[3]

Exercise is also considered vital for maintaining mental fitness, and it can reduce stress. Studies show that it is very effective at reducing fatigue, improving alertness and concentration, and at enhancing overall cognitive function. This can be especially helpful when stress has depleted your energy or ability to concentrate.[4]

Foam Fest

It took a while to get it, but for me, running and exercise are not optional.  Most folks I know work out for their physical health, but that’s not my main focus.  It’s absolutely mandatory for my mental state that I work out daily.  This means prioritization of physical exercise with no excuses.  Other things will wait. Others may exercise “if they have time”.  I must make the time.

Consequently, my house is never all that tidy and picture perfect.  I’m behind on several projects.  Ironically, I’m a good fifteen pounds overweight (menopause has done a number on my metabolism!), but I just ran a half-marathon last weekend in 2 hours, 28 minutes.  I can climb 30 flights of stairs without passing out.  I survive a weekly spin class with thinner, younger people.  My mind is clearer.  I find that if I start each day with some form of physical activity, and sometimes it’s merely a climb to my eighth-floor office, I’m more focused and less anxious. 

Carroll Mud Run

Over the years, running has become a family activity. Brian doesn’t like the “running” part of running much, and generally will only run obstacle or mud runs, which he finds more entertaining than fun runs. Evan runs daily unless it’s raining or too cold. He actually burns through a pair of shoes every three months!

I’m still on antidepressants, but now at a much lower dose since they’re combined with my exercise regimen.  I thank God that my body has held up thus far, and that I’m strong.  My brain may never be as clear and flexible as it was BASDD, but exercise makes it better and I feel more alert.  Each day I make a conscious choice to run into sanity.  It’s the only sensible option for me.


[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4977076/

[2] https://www.verywellmind.com/surprising-ways-that-stress-affects-your-brain-2795040

[3] https://www.mensjournal.com/health-fitness/stressed-out-heres-how-running-can-help/

[4] https://adaa.org/understanding-anxiety/related-illnesses/other-related-conditions/stress/physical-activity-reduces-st

Posted in School Daze

Having the Wisdom to Recognize (and Heed) Great Advice

This is Part 3 of a 3-part series on some best parenting practices that worked well for us!

Recently I’ve written about flexibility and being a passionate advocate as two of three best practices that transported us from the chaos of “then” to the relative calm of “now”.  The third key is recognizing & heeding great advice.  Today I’d like to share some of the best parenting advice I ever received in regards to raising Brian.

After Brian broke free from a line, made a dash for the main office (looking for me) and subsequently slapped the headmaster on the first day of third grade, he was expelled (an outburst spurred by severe sensory issues, we later discovered).  The headmaster, Mary T., made an inordinately helpful recommendation.  She suggested an evaluation by a neuropsychologist, specifically Dr. L.  The purpose of the evaluation would be to assess Brian’s intellectual, cognitive and emotional functioning.

At the time we met with him in September 2005, Brian was eight years, 9-months old. Brian was evaluated over three days, 9/16, 9/26 and 9/30.  Dr. L administered a battery of tests including the Wechsler Intelligence Scale for Children, the California Verbal Learning Test, the Woodcock-Johnson, a grooved pegboard test, visual-motor integration tests, Behavior Assessment System for children (parents rating), among many others, plus behavioral observations and a clinical interview.

Looking back on the family history makes me feel sad, and reading it, I flash back to the feelings of desperation and loneliness that were my constant companions.  Here’s an excerpt:

“His parents confirmed that Brian is having difficulty at home and at school.  The reported that Brian is increasingly resistant and oppositional at home, and his school performance continues to be erratic due to impulsivity and distractibility.  The reported that he is having difficulty with self-esteem and both believe that Brian tends to be overly sensitive, self-critical, easily upset or overwhelmed, and unable to handle constructive criticism.  In the past, he has voiced depressive, anxious and suicidal thoughts, but has never attempted suicide.  Moreover, he struggles in his relationships with his brother who has been diagnosed autistic.  Both parents report that Brian has few friends and has a hard time acquiring new friends.  His parents reported that his reactivity will push his friends away.”

This was a brutally tough time for everyone.  Evan had many needs in his own right, and Brian was increasingly out of control.  Brian’s psychiatrist, Dr. H., once explained that the process of figuring out the most efficacious balance of medications was “more art, than science”.  I appreciated her honesty while resenting that the process forced my child to play guinea pig before he could get better.  At the time of this evaluation with Dr. L., he was being treated with Geodon (not for bi-polar disorder but because of the severity of his non-verbal learning disabilities creating severe frustration with all aspects of life).  Past attempts to help my baby included Adderall, Trazadone, Abilify, Zoloft, Lexapro and Risperidone.  Doctors just couldn’t get a handle on a good course of treatment.  And I absolutely would rather have him “acting out” and impulsive than drooling and zombie-like (which happened with the Risperidone).  His quality of life was almost nil, and I was praying that Dr. L could offer some help.

The test results were comprehensive and revealing.  A few highlights:

*Struggled to maintain attention to task…exhibited poor frustration tolerance and constant movement…responded better to choices rather than being told when or how to perform a task (too true to this day!)

*Poor pencil grip…exhibited a fine hand tremor bilaterally…would trip over himself…significant difficulty walking heel to toe

*Speech impeded with difficulty pronouncing his R’s

*Full-scale IQ score of 119 (90% percentile) …Working Memory is an absolute strength in comparison to his other abilities

*Manual dexterity performance at the 2nd percentile relative to others his age…exhibited particular difficulties in fine motor control and coordination

*On the Woodcock Johnson:  Academic Skills – 99 percentile, Academic Fluency – 99 percentile…In all areas Brian scored in the Above Average to Superior range…he does not meet criteria for an academic learning disability

*Parents tended to be in total agreement regarding his difficulties…of particular importance was their consensus on very critical items such as Brian threatening to hurt others and saying “I want to kill myself.”  {Re-reading this and writing it down breaks my heart.}

*On the Millon Pre-Adolescent Clinical Inventory:  Brian feels increasingly inadequate and is plagued by self-doubt, a diminished capacity for pleasure, preoccupation with social difficulties, and vacillations between sadness and rage…In general, he feels emotionally out of control and looks to others to help him regain his control, but in frustration becomes rageful and explosive.

*When angry or experiencing emotional upheaval, Brian is in danger of making bad decisions…his emotionality explains his impulsivity…his irritability and poor impulse control likely lead him to struggle with his own peers, which leads him to then become resistant or aggressive when relating to others.

Recommendations included:

*Individual therapy combined with parental education to help Brian improve his current self-concept and to encourage more adaptive coping.

*Psychopharmacological management of his symptoms should be followed thoroughly…work with physician to go back to less potent medication in six months to a year…sometimes neurological maturation can alleviate the necessity of such medications.

*Brian be encouraged to use a computer to complete written assignments

*Always reinforce visual information with auditory information…have him read out loud as he studies material

*Reduce visual clutter

*Greater time limits on projects or evaluations

*Allow him to take tests verbally

It was educational and informative to have the test results, all neatly bundled, with some recommendations that would inform many IEPs to come.  However, even with all that, the MOST HELPFUL advice I received came in reply to the following question (I asked to Dr. L):

“What can I do, what is my role as a mom, how can I best support Brian’s needs based on your observations and experience?”  His brilliant and unforgettable reply: “Your job is to keep him out of the criminal justice system and help him survive his childhood.”

Huh?

He went on to explain that many kids like Brian end up in trouble with the law or suspended from school (been there, done that), or in other negative circumstances.  Often, their autistic meltdowns and tantrums are perceived as “behavioral and deliberate disobedience or mayhem, and are treating by school officials and law enforcement accordingly”.

He shared that with time, many of these kids turn out to be delightful adults.  My job was to facilitate Brian’s maturation, and hopefully with time and patience, he would outgrow much of the undesirable stuff, and retain the “delightful” stuff.

Something about his words resonated and I took the advice to heart. Time and again, we’ve experienced difficulties and challenges in raising a high-functioning child on the spectrum, more so in some ways than our more classically “autistic” child.  Brian appears “normal” outwardly, and the world judges him and his behavior accordingly.  Evan is more obviously autistic and is therefore afforded more deference.  Because he is outwardly smart and academically ahead of the pack, Brian’s misaligned behavior must be due to his being a brat…defiant and obnoxious.  Essentially, that’s the way the world judged him.

Brian found himself in trouble with teachers and staff, many times along his journey because he calls it like he sees it.  Always.  Teachers would say “Brian cannot talk to adults that way”.  And I’d think “well, duh!”  His impulsivity and lack of filter in expressing his opinions were part of his essential make-up.  Telling him to not call it as he saw it?  Might as well ask him to transform into a world-class gymnast or paint like Picasso.  Not in his essential make-up.

I learned, in large part thanks to Dr. L, that running interference with teachers, was where I was most needed.  Frequently, their first reaction was to get defensive and consider disciplinary action.  My first action was to focus on his diagnoses and his needs, and to try and pinpoint the best accommodations. Truth was that until and unless Brian was pushed too far, he pretty much towed the company line.  We just had to figure out how to create that environment in the academic setting where he was stretched but not pushed too far. A win-win for all.

I can’t say thanks enough to both Mary T. and Dr. L.  You’re two of my personal heroes, and you made a tremendous difference.  I strongly suspect that we might not be where we are today without your wisdom, insight, and influence.

Posted in Food Fight!

Chicken Nuggets and Curly Fries

I didn’t go down without a fight on the whole “food issues” thing.  My parents were excellent cooks, and I grew up eating homemade Welsh Rarebit, Turkey Tetrazzini, Eggs Benedict, and mac and cheese from scratch. 

When I started cooking for myself, I followed their lead. I learned how to use Cajun spices, to liberally use Tabasco, and studied the art of making a decent roux.

I never met a veggie that I didn’t like. Brussels sprouts, spinach, turnip greens, salads of all kinds.  I thought they were all delicious and couldn’t wait to share some home-cooked creations with the family I would have one day.

I was not prepared for the “culinary piece” of the sensory issues that came with having boys on the autism spectrum.  So when autism became our new norm, it took me more than a minute to accept that my fantasies of cooking tasty, lavish meals for my own family were fizzled. 

My sons couldn’t be more different in their taste preferences and tolerances. Both of my boys were so incredibly picky, and as kids, neither ate more than a few kid-friendly foods (fries and chicken nuggets were fan favorites).

One time I forced Brian to taste my relatively tame (no spice, no chunky ingredients) spaghetti with sauce.  He first threw a total (disproportionate in my eyes to the task at hand) tantrum.  He then tried what we call in our family a “mouse bite”, made some spitting and choking noises, and then proceeded to barf all over the kitchen table. 

Evan would throw tantrums of such proportions when asked to “try a bite” that the neighbors could hear him two doors down! Where were the sounds of “please pass the peas” or “save some of that Szechuan beef for me”?!

What I couldn’t understand back then was that just the smell of the marinara sauce made Brian’s stomach turn back flips.  To this day, as a young man, he cannot tolerate marinara sauce, and for pizza night, he enjoys a sauce-free pie.  Evan’s tolerance was equally limited, just with different foods and textures.

When Evan was about four, I almost starved him trying to “teach” him to eat new foods.  I was particularly focused on grilled chicken breast, determined to break him from his obsession with fried foods.  Our pediatrician said that when he got hungry enough, he would eat.  Sometimes these well-intentioned docs don’t have a clue.  With kids on the spectrum, all bets are off.  It may be the smell.  It may be the texture.  Maybe it’s the appearance.  Or maybe it’s not balanced just so on the plate (in a Bento Box kind of way).  Whatever the reason, it ain’t happenin’ and that’s the end of it.

For those familiar, we tried the GFCF diet with both boys while they were younger. Brian showed no improvement, and Evan showed some gains on the diet. For a couple of years, he was gluten-free. But over time, we discovered that with digestive enzymes, he could eat wheat without negative effects.

I accepted long ago that there are many battles not worth fighting. As any parent of a special-needs child knows, there are exhausting challenges we face every day. I learned to focus on the most pressing matters. Issues that seemed important “before autism”, often became insignificant. (E.g., it would be ludicrous to teach “don’t talk with your mouth full”, when you would give anything just to hear your child talk).

Eventually Evan did try the chicken, and grilled chicken became one of his favorites.  Brian is a food purist and never mixes flavors, so casseroles of any kind are a no go.  Evan has really branched out over the years, culinarily speaking.  He loves Caesar salad, pasta of all kinds, tacos, fajitas, and will even eat green beans.  While Brian never met a fruit that he didn’t like, there are precisely three fruits that Evan eats:  granny smith apples, strawberries and honeydew melon.  We’ve come light years from those early days.

Around the time that I began accepting that my fantasies of family food fests were shattered (circa 2008), I recall sitting poolside with several moms from our homeschool group.  We were watching our kids splash in the water, and I was reflecting on how much it sucked that my boys’ primary diet was comprised of chicken nuggets and fries.  A Jimmy Buffett song came on the radio, one of my favorites, “Cheeseburger in Paradise”.  The wheels in head began to turn.  While sitting by the pool, I wrote a song to the tune Cheeseburger in Paradise.  Somehow and a weird once-in-a-lifetime-never-to-be-repeated way I convinced the boys to participate in putting together a video which we later uploaded to YouTube.   

Today I’m taking a light-hearted look back, and remembering those earlier days and some of our favorite food memories.

Bon appetit!

“Chicken Nuggets and Curly Fries”
Brian and Evan:
Tried to amend Mom’s culinary habits.
Made it nearly 11 years.
She serves junk food with speed.
My bro and I need
To eat unhealthy food or so she fears.
 Cindy (and Ed who faded himself almost entirely out of the song!):
But still I remember an old recipe
For lasagna with parmesan cheese.
Caesar salad, garlic rolls, au gratin peas…
Kids of all ages, I thought it would please.
 All:
Chicken nuggets and curly fries
Eating all this fried food
Just cannot be wise.
We’re well on our way to an early demise
With all these chicken nuggets and curly fries
 Brian and Evan:
She asked us just to try one wonderful meal.
Begging and bribing, using all her appeal.
We just cried
Asked for food that was fried
Gagging at the table if she made us try the veal.
 Cindy (and barely-there Ed):
Times have changed for my honey and me
We rarely get what we need.
Not just Autism and Asperger’s and OCD,
But full-blown chaos crashed our family!
 All:
Chicken nuggets and curly fries
Eating all this fried food
Just cannot be wise.
We’re well on our way to an early demise
With all these chicken nuggets and curly fries
 Cindy (and Ed?):
I used to dream about family dinners out.
Turkey tetrazzini and brussels sprouts.
But sensory issues chased those dreams away.
And now we’re eating Happy Meals every day!
 All:
With all those chicken nuggets and curly fries
Eating all this fried food
Just cannot be wise.
We’re well on our way to an early demise
With all these chicken nuggets and curly fries
 Cindy (and Ed?):
I used to dream about family dinners out.
Turkey tetrazzini and brussels sprouts.
But sensory issues chased those dreams away.
Now we’re eating Happy Meals every day!
 Brian:  With extra ketchup!
Posted in School Daze

Forced Flexibility aka Autism Acrobatics

Part 1 of a 3-part series on “Best Parenting Practices” (that Worked for Us)!

Let me preface this entry with the following caveat.  Brian is now 22 years old, and graduating in May from a college honors program with a degree in Communications and double minors in History and Spanish.  He’s headed for Scotland in the fall to attend the University of Glasgow for his Master’s degree.  He’s witty, insightful, smart as a whip, and fun to be around.  He’s no longer on any medications and has several close friends at college.  I love him with all my heart and soul.

It wasn’t always so (the first part…I’ve always loved him!)  He’s struggled mightily to get to where he is today.  It’s been a rough road (and that may be the understatement of the year).  As a youngster, Brian’s diagnoses included Asperger’s Disorder, Attention Hyperactivity Disorder, Non-Verbal Learning Disability, Depression, Anxiety, and Sensory Integration Dysfunction.

Looking back, there were many factors, events and people that contributed to transforming Brian from an out-of-control, impulsive child to the brilliant and hilarious young man he is now.  Three main themes stand out for me:  1) flexibility; 2) a passion for advocating for my sons;  3) recognizing and heeding great advice when presented.  Over the next three blog posts, I’ll visit each theme and relay some of our experiences.

My focus today is flexibility.  I’ll share some thoughts and then take a walk down memory lane, sharing some history of the “Life of Brian” from Kindergarten through 4th grade. 

By “flexibility”, I refer to the ability to adapt and to not stay wedded to any particular course or plan.  The capability to veer in varying directions at critical junctures.

Full disclosure…I was NOT very flexible prior to this autism baptism by fire.  “Because I said so” was my initial and early parenting mantra.  I won’t say it changed quickly, because it didn’t.  I beat my head against a wall more than once or twice before I “got it”.  But it’s sooo worth it.

In my opinion, as an autism parent, you ultimately adopt one of three attitudes.  1) Freeze or Faint:  Stay stuck in denial (many do), and mentally shuffle the facts so that reality is bearable.  2)  Flight:  Accept the diagnoses, but refuse to take on the huge challenges that come with providing your kids the help they need.  Assume the school and others in authority will do what’s right and get your kids’ the help they need.  3)  Fight:  Jump in with both feet.  Immerse yourself in all things autism and related issues.  Be flexible, advocate, and listen to others who have been there with wisdom to share.

I highly recommend Door #3 – FIGHT!

In 2002, Brian enrolled in a small private school in Georgia for Kindergarten.  When we applied, I chose to not reveal his Asperger’s diagnosis.  I didn’t want that to factor in whether or not he was accepted.  He passed the entry tests and was admitted.  We couldn’t really afford private school, but even back then, I felt that Brian would be “eaten alive” by the GenPop kids, so we just figured out a way to make it work.  His differences were not as apparent back then, but he was quite impulsive and lacked self-control.  These traits were common to many of the kindergarteners, so he didn’t stand out too much.

A few of my memories of his kindergarten year:  he was already interested in sports and was reading the sports page daily to check on the Atlanta Braves.  Brian would tell his assistant teacher every day what the paper said about the Braves.  He was also reading chapter books, and way ahead in math, and so his teachers were mostly “wowed” by his relative strengths at that age.  He also had an extensive speaking role in the Christmas play.  He was selected because he memorized so well, and he was able to pick up his lines incredibly fast.  It was so cute to see his scene as he explained to the Headmaster that “Christmas wasn’t about toys and getting gifts”.

But I also remember him crying a lot, running to the bathroom, getting his feelings hurt easily (they played musical chairs once, and he absolutely refused to accept that he was “out”.)  There were quite a few bumps in the road, but it was K, and so it was for many of the students.

First grade was similar to Kindergarten…the strengths overshadowing the weaknesses, but still bumpy.  Many comments emerged that “Brian needs to learn to raise his hand”, and the like.  Impulsivity had been an issue for him since he was a toddler.  Also, by first grade, he was self-aware enough to develop stage fright, and when he was asked to sing with the group in the Christmas play, he ran from the stage and out of the auditorium.  We found him huddling at the other end of the church.

In second grade, he had a teacher that had (in my opinion) poor skills controlling the classroom.  She seemed to allow the class to take the lead.  This was disaster for Brian because he was all too willing to be in charge.  By second grade, his differences were becoming much more apparent.  There was an incident where Brian was in an after-school science club, and when the teacher announced that they were going to do a dissection (a frog), and Brian melted down.  He ran out of the classroom, leaving the teacher stuck with a room of kids with Brian on the loose.  There were a couple of times that year that Brian ran away from the classroom.  Concern among staff was growing.

Along came third grade.  The first day of school just happened to be a chapel day, which meant the kids wore their formal uniforms.  I still can’t believe that for K thru 2, Brian wore a button-down shirt with a clip-on tie and uncomfortable formal shoes – twice a week?!?  These days he lives in shorts, t-shirts and Crocs, even in the wintertime!

Anyway, on the first day of grade 3.  Brian was returning from a  summer of wearing shorts and sneakers.  Here he was, stuffed back into formal clothes on the first day of school.  When it was time to walk over to chapel, Brian was asked to get in line and follow the other students.

Note:  I mentioned earlier, private school wasn’t in our budget, so when Brian was in first grade, I started working part-time in the school office in order to receive the tuition discount.  Brian knew that I was in the front office, working most of the time.

So on that first day of third grade, Brian was feeling very uncomfortable in his formal attire.  His shirt was bothering him, and his shoes hurt.  He broke out of the line, and made a run for the front office, hoping to find me there.  Unfortunately, I wasn’t working that day.

The receptionist didn’t know about the achy feet and scratchy shirt, and Brian didn’t tell her.  She made him go get back in line.  He went, but again tried to break free.  The staff restrained him, and so of course, he fought back.  Fight or flight, and the “flight” didn’t work so well for him.  He hit the teacher who was restraining him, and also hit another teacher who was trying to help the first teacher.

Later, the Headmaster (who was also my boss), sat down with Brian and Ed to calmly discuss what had happened.  My husband had been called and already arrived on scene.  Ed didn’t realize that with Brian already upset and triggered, the best course of action was to take him home, and return another time for that “calm” discussion.  I later discovered that he, meaning well but not processing clearly, struggled to restrain Brian, thus pushing him over the edge into fight or flight mode again!  Brian wriggled free and slapped the Headmaster in the face.  He was expelled, and our private school days were done.

Ed was briefly unemployed at this time, and we were all traumatized by what happened at school.  Brian was emotionally a wreck, and we were also experimenting with different meds.  By this time, it was already several weeks into the school year, so we decided to homeschool Brian.  Ed and I would share the role of “teacher” since he was between jobs.

That semester was a disaster.  It was a good thing that Brian was so smart and already ahead of his peers, because he didn’t get much teaching from us.  Ed was busy looking for a job.  I had no formal program going…just winged it.  We did however, join a local homeschool group that was helpful and provided field trips, park days, and other events that were beneficial.

After a semester of pseudo-homeschooling, we enrolled Brian in public school for the second semester of third grade.  I had extensive discussions with the lead person (she was kind of the VP of special needs).  They recommended a psychologist.  We saw her immediately and for many appointments.  The psychologist consulted with the school, and we got a program set up for Brian.  He didn’t do specials at all, at first.  He ate lunch in the conference room next to the VP’s office, and was allowed to invite a friend to eat with him daily (this was a big school with a really loud cafeteria, and lots of smells that irritated Brian).  He started the year (I still can’t believe this) with the group of kids that are “pulled out for resource”.  Basically, he was with a group of 4 or 5 other kids, mostly WAY behind academically, but it was a safe and quiet environment. 

And then the good Lord blessed us with a teacher who “got” him in a way that others didn’t.  She later shared with me that the reason she enjoyed Brian so much was because she herself had Asperger’s and she could relate.  It was a beautiful, symbiotic relationship.  She was the resource teacher, and didn’t have a homeroom class, yet Brian went to her for homeroom.  While she graded papers, or did her morning work, he sat with her and did brain teasers, puzzles, or read a book.  Totally stress-free way to start the day, much better than often noisy and crowded homeroom classes.  He stayed with her for academics as well, and she was super-willing to go with his flow, academically.  If he asked a question that was ahead of what they were doing, they explored the answer together.  She was great with him, and he flourished.

Gradually, over that semester, Brian started going to regular third grade classes.  Week by week, we added a bit more, and eventually specials and lunch fell into place.  By the end of third grade, Brian was completely integrated with the other third graders, doing beautifully.  We adults patted ourselves on the back – great job!

Somehow we lost our focus (and perhaps our minds).  Brian was doing so beautifully by the end of the third-grade year, and it just didn’t occur to any of us what might happen after being out of school for a whole summer, and then jumping into fourth grade full boat, with no transition time.  And so, he began fourth grade, with no transition:  homeroom, specials, lunch, the whole deal.

Sadly, he didn’t make it past the first week.  He was “eloping” from the classroom.  Hiding in the bathroom, clinging, people trying to pull him out.  Once again, people (more than one) restrained him on a couple of occasions, and of course, he fought back.  Along the way, he hit the vice principle, and a teacher. 

He was suspended, and we (the adults) began “meeting” to figure out what to do.  We agreed that it had been foolish to not ease Brian in, but what was done was done, and there were no do overs.

We tried several placements within the school, but by this time, Brian was so traumatized that he just couldn’t deal.  The school recommended a program at a special school where they would be able to deal more effectively with his outbursts.  This school actually had rooms with padded walls.  I had heard stories from other parents, and I knew in my heart that this was definitely not the placement Brian needed.  While other parents went through endless IEP battles, bringing in attorneys for protracted legal battles, I felt that I could do a better job helping Brian to decompress and learn at his own pace.

And so, we began homeschooling again, this time in earnest.  I had to quit my job to accommodate our new routine, and took on part-time evening work.  We re-joined the local homeschool group, and most of the time it was a good fit.  Brian still struggled with meltdowns, tantrums, and impulsivity.  He never internalized a sense of his “place” in relationship to adults.  I think he was born a mentally old soul, and this contributed to him not being able to follow instructions and obey adults.  In his mind, he could take or leave their directives.  And he didn’t have much of a filter.  He called it as he saw it.  Still does!  But it’s received differently by others when you call it as you see it at age nine or ten vs. twenty-two.  Simply growing up and being more equal as an adult has been one of the best things to happen to Brian.  Unfortunately time takes time.

Our homeschool group offered a weekly series of classes.  If you wanted your kid to take a class, you had to teach a class in return.  It could simply be Storytime for the younger kids, or any area in which the parent excelled.  We signed up, and all was well at first.  I taught basic Spanish.  Brian took a history class, a science class, PE, and a class called Math Games.  Sadly, Math Games became our undoing.  The mom/teacher was married to a Marine, and was one “squared away” lady.  Inflexible, and not very patient with out-of-the-box behaviors.  In retrospect, knowing this, why did I allow him to be in her class?  It wasn’t the smartest decision.  Hindsight being 20/20 and all that.

Anyway, one day in Math Games, the instructor made some mistakes in her calculations as she demonstrated for the class.  Brian, being Brian, loudly announced in front of the group: “You don’t know what you’re talking about!”.  Diplomacy was not one of his core strengths. 

It got ugly from there.  Beyond frustrated, I lost my cool (which didn’t exactly help matters).  Ultimately, we were asked not to come back to the weekly classes as the teacher felt threatened by Brian.

As hard as that was, things did get immensely better over the years, as described at the beginning of this post.  Today, I’m reflecting on my journey in flexibility.  From “because I said so” to a completely different world view.  And today I’m grateful.  I am beyond proud of Brian.   And although I never envisioned navigating private school, public school and homeschool (and all that entailed), I’m a better mom, wife, employee and friend for it.  Today’s mantra:  Adapt and overcome!

Next up:  Part 2 – Advocating with a passion!

Posted in Early Teen Years

Silence and Darkness…Evan Recalls Life as a Baby with Autism

This video was filmed in early 2011.  Evan was almost 12 and Brian had just turned 14.  We were in a hotel room in Atlanta, having tagged along with Ed one of his business trips. 

We were playing in the hotel room when Evan mentioned that he could recall that when he was little, he couldn’t see or hear.  I wanted to capture Evan’s thoughts on the matter, and thus turned on the video camera and “interviewed” him.  In typical big brother razzing little bro fashion, Brian playfully teases Evan, calling him a “liar liar”.  Evan has the best memory of anyone I’ve ever known, and wasn’t much on lying (at least not at that age…all bets were off as an older teen).  I think he was being for real.  And how scary it must have been for him!

Posted in Present Day

Pitching Camp and the Potty Predicament

I recently asked Evan, what he wants for his 20th birthday, and he says he’s willing to forego presents (not too surprising) and cake (shocking) for a trip to the Firefly Music Festival in Dover, Delaware this summer.  I was surprised that he would want to attend such a huge social gathering.  On the other hand, he’s always loved music.  Any of his extra dollars go directly to iTunes.  And one of his favorite pastimes these days is cruising around the neighborhood, driving with the sunroof open, windows rolled down, and the music cranked up.  Waayyy up.

Evan asked if just he and I can attend the music festival.  I think he feels like he can be himself around me without being judged (which is true), and so he can relax and enjoy.

I started looking into this music festival thing. Not only are the passes $300 per person, but it’s not practical to not stay on site.  In conjunction with the music festival, there’s also a GAC – Great American Campout.  Thousands of people bring their tents and RVs or rent “pre-set” camping or glamping sites set up by the festival organizers.   I dislike bugs and sleeping on the ground, so I checked out the glamping options which have beds and a/c.  There are no toilets in the glamping tents, but they do come with access to “private air-conditioned restroom facilities”. In a neurotypical world, I’m guessing that’s all one would need to know. In our world, the devil is in the details.

Which spurred the following e-mail from me to the event organizers:  

“Good day,   My 20-year-old would like to attend Firefly as a gift for his upcoming birthday.  He also has autism, and is very sensitive to public bathrooms, automatic flushing toilets, and bathrooms with hand dryers.  My question is this.  If we were to select, for example, “Infield Glamping”, could you tell me specifically all the details about the “Private air-conditioned restroom facilities”?  What does the word “Private” mean?  How many people/ tents share a bathroom?  Is it just toilets or is it toilets and showers in the bathroom?  Are there hand dryers?  Automatic flushes?  What exactly is a shower “fast pass” and how does that process work?
Is there any venue you could recommend at Firefly that would have no automatic flushes and no hand dryers?
  I realize these may sound like odd questions, but it’s all important to him.  I appreciate you taking the time to research, investigate and answer these queries.  Have a wonderful day!”

Still advocating to this day, I’m trying to shift focus toward teaching Evan to self-advocate.  It’s hard to break old habits, though, and I find myself jumping in to write e-mails or make phone calls on his behalf.  At least these days, I “cc” Evan on any e-mails and/ or include his contact information.  We’ll often make phone calls on speaker phone, so he can learn what to ask and how to answer queries.  So I wrote to the Firefly event organizers, asking about the potty sitch, and included Evan in the correspondence.

Before I received a reply, I got a stiff case of sticker shock.  As much as I’d love to rent one of the air-conditioned glamping sites, I’m not willing to pony up $1200 for the four-night stay (in addition to the passes).  So instead we decided to rent a basic camp site close to the music.  I just purchased an “instant” 4-person tent on Amazon, hoping that even with my visual-spatial challenges, I can figure out how to set it up properly.  Evan struggles with issues with coordination (or lack thereof) and motor skills.  Apple, meet tree.  I’m not sure he’ll be much help in the tent set-up department, but we’ll manage.  We’ll use blow up airbeds to make the ground a little less hard.

Bottom line is that come June, I’ll be hanging out with 80,000+ Gen Zers and Millennials, listening to music that I don’t recognize, sung by artists that I’ve never heard of, in huge crowds of rowdy “young people” (I really dislike crowds).  I’ll be stuck in a tent with no A/C in the sticky summertime.  Bugs and humidity and port-a-potties…oh my!  And the total cost is around $1200 (I could go on a 7-day cruise for $1200)!  Why on earth would I ever agree to something like this? 

Quite simply, it’s because he asked me to.  He asks for so little…this is rare that he actually requests something so meaningful to him.   So off we’ll go.  I’ll be praying for good weather, and taking a rather large cooler of adult beverages (they do sell ice on site and even have a Bloody Mary bar, so there’s an upside)!  When I look back at our tumultuous history, and all we’ve been through, I stop and appreciate.  And I’m thankful.  I’m looking forward to some “mom and son” time hanging out with Evan.  Not sure how many of these opportunities may come in the future, and I’m fully aware that I need to seize this one.  Time spent with this beautiful, wonderful young man?  Priceless!

Posted in The Early Years

The Potty Predicament

When Evan was younger…potty trained but not yet verbal enough to explain his fears and concerns…public outings and trips were nightmarish. Evan was terrified of public bathrooms, especially ones with automatic flushing potties and hand dryers.  Back then he couldn’t express his fears…he would just meltdown if I dragged him into a public bathroom.  How was I to know the sensory overload generated by an autoflush toilet? Later, he told me that a hand dryer looks like a scary open mouth that might bite him or swallow him.  Grateful that he could express his anxiety, yet I felt guilty for the many instances that I forced him into a restroom. When I understood his fears, public toilets were no longer a viable option.

Long car trips presented extra challenges since poor Evan couldn’t tolerate rest area bathrooms or bathrooms in most public places.  It was much later that we discovered that Cracker Barrels had regular flushes and no hand dryers, but by then, Evan wasn’t going into any public restroom for any reason. Period.

Ed used to say that if Evan needed to go badly enough, he’d suck it up and endure the hand dryers and the auto flush toilets.  I knew better.  It was torture for him. So when we traveled, I used to take Evan off to a distant tree and let him pee there.  If he needed to poop, I’d support him under his arms while he pooped under the tree.  I brought tissues so he can wipe his little butt.  Ed almost died of embarrassment each time this happened, worried what other people would think. 

Did I like that Evan was pooping behind a tree in a rest area?  Negative.  But I liked less the thought of my baby, terrified to go into a public restroom, trying to hold his pee and poop for 8 or 9 hours.  His well-being comes before my embarrassment.  I do whatever is necessary to take care of my boys, whether conventional or kooky.  Ed is solidly in the “traditional” camp.  Being unconventional is solidly in my wheelhouse.  “Normal” is overrated and boring.

Through the years, and through many school experiences, I would repeatedly and successfully advocate for Evan’s potty needs.  In one elementary school, they had a plumber come out and change an automatic flushing toilet in a quiet admin area back to a regular flush, just for Evan.  In high school, Evan was excused from having to enter the locker rooms for P.E. (hand dryers), and was authorized to use the private, regular flush restroom in the nurse’s office. 

As a new autism mom, I didn’t realize how much advocacy would be involved in raising my kids on the spectrum.  Over the years, I would learn that almost anything within reason, can be arranged as far as accommodations within the academic setting, including suitable restroom facilities.

Posted in The Early Years

The Diagnoses (September 2001)

By 18 months old, Evan lost most of his verbal and fine motor skills, and withdrew into the world of autism.

My boys’ autism diagnosis is inextricably tied to 9/11.   I guess all of us remember where we were and what we were doing on September 11th, 2001.  That same week, I received the diagnosis, the official report, stating that both of my boys have autism.  I already knew what it would say – I had been prepared.  Still the confirmation hit me hard.  And with Ed in Washington D.C. for a training class, he was not only “not here” to be with me, worse, he was “there” in D.C.  When American Airlines Flight 77 hit the Pentagon, Ed took photos from his hotel room, right across the Potomac, of the smoke rising from where the plane struck.

The kids and I had been watching Barney.  The “kids” are Brian, Evan and the three siblings I was nannying in order to bring in some cash, and provide social stimulation for the boys.  Knowing Ed was in D.C., one of his sisters interrupted the dancing dinosaur with a phone call, frantic to find out if Ed was okay.  That’s how I learned about the Twin Towers and Pentagon terrorist attacks.  During an episode of Barney.

Later that week, when I received the report, I was prepared for the diagnoses because I’d already done my homework.  Ever since my sister, Annie, made “the comment”, I’d researched my heart out.  Annie’s remark came after she and her family joined us for the July 4th holiday.  As they packed up to leave, and we said our farewells, I picked up my two-year old, and said “Evan, say bye to Aunt Annie and Uncle Jay”.  Annie’s comment (that I remember vividly to this day):  “Cindy, I don’t think he’s known we’ve been here the whole week”.

My first thought was:  WHAT THE HELL?  Followed shortly after by:  “Oh crap, is she right?”  The more I thought about it, the more light bulbs went off.  He didn’t look at them, didn’t make eye contact, didn’t interact or play with his cousins, he lined things up, and repetitively made strange movements that I later learned were call “stims”.  I frantically thumbed through my copy of “What to Expect When You’re Expecting”, which included about six paragraphs (in the Childhood Illness section) on autism.  I recognized it immediately.  And cried.

I hit the internet with a single-minded determination to learn more.  I took a deeper dive into all things autism, trying to understand my baby and how to help him.  As I read, I had an epiphany.  One aha moment after the next, and by then I was 100% convinced that not only did Evan have autism, 4-year-old Brian, clearly had Asperger’s syndrome.  It became crystal clear.  He had significant speech delays, was hypontonic, had multiple and severe sensory issues, was obsessed with trains, read at age 4 and was generally too “smart” for his age.

Even though I knew the diagnoses in my heart, there’s something about seeing it confirmed on paper.  The developmental pediatrician had been thorough in testing both boys, and I knew her assessment was accurate. 

Looking way back to my own childhood, I recall being assaulted by overwhelming smells, sounds and sights.  Trips to the mall hurt my ears because the buzzing of the fluorescent lights was crazy-loud.  I was the quintessential “princess and the pea”, and a lump or bump in my mattress would screw up my sleep in a heartbeat.  Still it would be a while after the boys’ diagnoses before I became sufficiently self-aware to recognize my own Asperger’s. 

I recently read an article about females on the spectrum, and the differences in how we present.  Our symptoms and behaviors may not be as readily apparent or appear “autistic”.  I discovered that my lifelong battle with anxiety, depression and PMDD is not unusual for female Aspies.   Matter of fact when I read Samantha Craft’s “Female and Asperger’s:  A Checklist”, I found myself check, check, checking along.  Her list hit the nail on the head.

I had answers to why I’ve always felt out-of-step, weird and like I don’t belong.  The question became…would that knowledge and insight translate into a system or program that would benefit my boys?

I would quickly discover that yes… my own quirkiness and unique way of viewing the world was immeasurably helpful in raising my boys.  Having all four of us (counting my husband) on the spectrum has been exhausting, exasperating, entertaining, and still…quite the growth experience for us all.  If I had a magic wand and could go back in time, there would be a few things I would change for sure.  But not many. Overall, I’m pretty content with the present.  And the present is a gift, much appreciated after living through the intense and often overwhelming experiences of our past.