AKA the Journey from Being "in Jeopardy" to (Fingers Crossed) "on Jeopardy"
I am an Autism parent, an Aspie, and married to an Aspie, Ed, my husband of 24 years. I’m writing to share our story, which is the real-life drama of raising two boys on the autism spectrum. Our story contains tragedy, comedy, lots of action, conflict and adventure. But it’s also the story of the evolution of an autism parent. For as much progress as my sons have made, I may have made more. I’ve become who I am today through their struggles and triumphs. People have told me over the years that I am a hero and role model. I don’t feel that way. My superheroes are Brian and Evan, and maybe my superpower has been in raising them. They are true trailblazers and the wind beneath my wings.
I just spent a most enjoyable few days in Atlanta with my boys, visiting old friends and celebrating the 4th. I’m amazed at how much easier it is these days…to travel, to communicate, to interact…all of it! It has gotten much better with time. Every year makes a difference. Granted, we all have different experiences, and ASD kids (and adults) are all different, but I’d like to share hope that things will get better. With time, patience, dedication, advocacy, and strong support, life with autism gets easier.
Evan ran the Peachtree Road Race 10K in 50 minutes (impressive with the hills and Atlanta heat). Brian worked out at NitroZone on the Ninja Warrior course. He’s getting in shape with a goal of making it on the Amazing Race one day, as well as on Jeopardy. All three of us enjoyed bowling.
Evan still has his “freak out” moments when he thinks he’s made a mistake or isn’t perfect (who is?). Brian still gripes about, well, just about everything. But the two of them are great travelers and for the most part, fun and engaging companions. I’m so thankful that I was able to spend a few days hanging out with these beautiful young men.
Raising ASD kids is soooo hard, no doubt about it. We’ve been through a lot and have scars to prove it. A few years ago, I wouldn’t have believed we’d be where we are today. My message is this: Hang in there! You never know what miracle awaits just around the corner.
I haven’t posted in a few weeks, and I’ve been feeling a nagging sense of guilt, which is actually easy breezy for me. I can rock mommy guilt, wife guilt, and employee guilt with the best of them. Why not blog guilt?
When I started up this site, I self-committed to posting regularly, and did so for quite a while. The last month? Nada! But as I force myself to slow down long enough to reflect on the past few weeks, I’m surprised and elated to note that guilt is actually superseded by pride and a sense of accomplishment.
Brian and Evan are home for the summer, and that in and of
itself means that life is busier.
Additionally, there’s been lots of other stuff happening.
Brian received his diploma, graduating Summa Cum Laude with recognition from the Honor’s College at Salisbury University.
Evan completed his first year at Salisbury University, with no special accommodations, taking courses in Macroeconomics, Microeconomics, Calculus, English, Communication, Information Systems and Physics, all with B’s and C’s!
Brian received a firm offer from University of Glasgow, and will embark on his Master’s Program in History in September.
Seeing as that Brian will likely need some help getting settled into his new digs in Scotland, and being the kind and loving mom that I am 😊, I’ve offered to help him during the move-in process. We’ve booked airfare for both Brian and myself to travel to Glasgow in September. Knowing that I’m a huge Outlander fan, Brian has kindly agreed to join me on an Outlander tour, visiting many of the castles and locales from the book and TV series. I can’t wait!
Evan and I are celebrating his 20th birthday with a trip to Firefly Music Festival next weekend in Dover. Four days of camping, sweat, bugs, and a musical lineup of bands that I’ve (mostly) never heard of. I’m sure it’ll be worth it as the time spent with Evan will be precious. We’ve been pre-packing and planning for weeks, and we’re almost set to go.
Immediately after returning from the Great American Campout at Firefly, Evan, Brian and I will begin carpooling three days a week to my office, where they both were offered part-time, summer positions. Brian as an Editor and Evan, as a Financial Management Student Trainee. This is such a blessing…it’s first real jobs for both of them. The folks I work with are kind and understanding, and I think this will be wonderful summer employment for them both.
I recently attended a conference at work that opened some doors which could potentially lead to some exciting opportunities in the future. I’m embarking on some new interesting paths…no telling where it all might lead!
My mom invited my sister (from Charlotte, NC) and me to join her for a girl’s weekend in Little Rock, and we recently met up in Arkansas to hang out, catch up and enjoy each other’s company.
My hubby celebrated his birthday, and of course Father’s Day this month, and we went out to our favorite restaurant to celebrate.
In the last month, I’ve run both a half-marathon and a 10K, both of which provided an excuse for my husband and myself to explore some new areas of town, and try out some creative post-race cuisine. I even won my age group award in the 10K! I was the only one in my age group, but hey an award’s an award!
So I haven’t been blogging much lately, but looking at all that’s happened in the last few weeks, I’m at peace. I’m savoring this busy, fun and exciting time spent with my family. These moments are truly priceless!
Last week, Evan got “the call” – an offer to work as a part-time summer intern at the federal agency with which I’m employed. I had advocated heavily for him and my boss was kind enough to float his resume around to the hiring managers. Since he is on the spectrum, Evan is eligible to be hired non-competitively for federal jobs under Schedule A authority. I asked his doctor to sign off on a Schedule A letter which specified his eligibility, and that was basically all that was needed from our end, paperwork-wise.
Evan will be working three 8-hour days
per week, driving into the office with me.
His career goal is to be an Accountant, and he’ll be working with other
Accountants, and doing some fairly routine, repetitive tasks, at least at
first. He’ll be earning over $14/
hour…for his first job! He is so
excited, and I couldn’t be more proud!
Trust me, it wasn’t always apparent that Evan would graduate high school, much less be able to work in an office environment. Evan was one of those kids who appeared neurotypical, then severely regressed. At 13 months old, he was verbal, spontaneously saying “thank you” when given a desired object or reward. His fine motor skills were in evidence as he enjoyed building Lego towers on the giant Lego set at Children’s Therapy Works, as we waited for brother Brian to complete his therapy sessions.
As I mentioned in an earlier post,
my sister, Annie, and her family joined us for the July 4th holiday in 2001. 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”.
That shocked the crap out of me…I hadn’t recognized Evan’s regression. That may sound crazy, but I just hadn’t seen it. He was still my cuddly little boy. Upon intense reflection, I realized that he wasn’t talking much anymore, and hadn’t any interest in Lego creations. Instead, he was lining things up and engaging in repetitive behaviors. He had checked out to a large degree, eyes glazed, enveloped by autism.
I quickly realized there were limited ways of connecting with him in this new reality. At the time, Blue’s Clues, Teletubbies and travel were our lifelines to reach him. I stated to anyone who would listen: “If I were independently wealthy, I would take Evan and travel the world”. Travel, including planes, trains, boats, taxis…all brought him back to me, at least for a few heartwarming moments at a time. The magic created by our travel adventures had him tuning in and engaging.
We were (and are) quite far from wealthy, but my husband did travel occasionally for his work, and we joined him when we could. Over those early years, we visited Florida, Hawaii, Puerto Rico, and California. With each experience, Evan’s eyes would light up, and I would think “Yes! C’mon baby! Come back to me”.
With time and more travel, Evan was able
to better communicate his fears and anxieties.
Public restrooms, autoflush toilets, hand dryers…all were ruled
out. Another quirk…he absolutely refused
to stay in “accessible” hotel rooms, which had the potential for strange flashing
lights (fire alarm for the hearing impaired), doorbells midway up the door, odd-looking
bathrooms (sometimes without bathtubs), and other strange features. On several occasions, we changed hotel rooms
to accommodate his concerns. Later, as we
got smarter, Evan began accompanying me as I checked in at each hotel. This provided an opportunity for him to personally
ask the clerk for a “non-accessible” room.
He’s learned to advocate for himself!
Over the years and through trial and error, this Floortime approach proved consistently the most effective platform for engaging Evan. Ed and I learned to join him in his interests and we built relationships around Wii sports, chess, travel, SpongeBob, football, and fantasy football. Evan enjoyed showing off his passion for football, and sports, and we made several fun videos along the way. Making videos is a great way to get the entire family involved . Potential roles include cameraperson, director, lighting, script-writing, and rehearsing. Researals, with all sorts of blooper potential is half the fun!
Whether it’s travel, outdoor activities, a TV show, a sport…whatever it is for your child, I can’t overstate the importance of joining him or her and connecting through that interest. Discover their passions and celebrate by engaging them whenever possible…even when it’s outside your comfort zone!
It’s been a super-long haul, especially
with two boys on the spectrum. They are
both still impacted and have anxieties and restricted abilities in many
areas. But it’s incredibly better today
than I could have imagined 18 years ago.
It takes an inordinate amount of patience, advocacy, effective academic
placements, OT, PT, SLT, doctors and other professionals, compromise, flexibility,
blood, sweat and tears, but wow, it’s worth it!
Evan’s summer job has the potential to evolve into a longer-term opportunity after college. The supervisor with whom he’ll be working this summer is one of the kindest, most genuine, caring human beings I’ve met. Mark (the supervisor) is a huge football fan and also a Salisbury graduate (Evan just finished up his Freshman year at Salisbury), so I think they will really hit it off. Mark and Evan and I have a meeting set up a few days before his official start date to discuss Evan’s concerns and anxieties. I asked Evan if he preferred that I attend, and he said “yes”, so I shall. We’ll likely discuss Evan’s need to be notified in advance of fire drills, so he can exit the building. We’ll let Mark know that Evan will be going to another floor for his toileting needs (the other floor has a private bathroom with regular flush and no hand dryers). I’ll let Mark know a bit about how Evan learns, so they can work well together. We’ll need to buy Evan some pants – currently he lives in shorts in the summer, and sweats in the winter. He won’t have to get dressed up, but shorts and Crocs are a no-go in the office. I promised Mark that I wouldn’t be a helicopter parent, but that I wanted to introduce Evan and let him discuss some of his concerns up front. Mark is totally open and actually invited me to check in with him at any time. I won’t get in the way, but still it’s nice to have the option to touch base, should something come up.
My parting thoughts are these: Please know that nothing you do for your
child is in vain and forgive yourself for being perfectly imperfect. You’ll make a lot of mistakes (Lord knows I
made a zillion). You may even be
horrified at some of your choices. We’re
human and subject to our own stresses and anxieties, and shit happens. On one occasion when Evan was learning to
drive, he pulled out at an awkward angle, in front of another vehicle, and I
actually turned to him as said “What the f**k are you doing?!?” Not exactly my finest parenting hour! We pulled over immediately so that I could
apologize for my overreaction. All is well
now, but I still can’t believe that came out of my mouth.
Parents screw up…it happens. The journey is about progress, not
perfection, so keep going, putting one foot in front of the other. Rely on your support networks. Online support is wonderfully convenient, but
if you can, reach out and maintain some “live” relationships with other parents
of ASD kids. Take care of yourself.
Exercise. Don’t be afraid to ask for
help, and take it when offered.
We all have our own journeys, and everyone’s story is different. Eighteen years ago, I wouldn’t have imagined Evan graduating high school (and receiving a peer-nominated school spirit award at graduation!), driving a car, touring Europe with little support, and going off to college. In those early “lost” years, it was unimaginable. And now, my baby headed to work as a student intern. The sense of pride and accomplishment runs very deep.
“Parents – you cannot be a passenger in your child’s life. You need to be driving…where it’s going and what needs to happen”.
In this last segment of his interview, Brian talks about having limited interests, tips for ASD parents and growing up with a brother who is also on the spectrum. This candid interview reveals his thoughts on relationships (or lack thereof) and advice for others with HFA.
Part three of this candid interview focuses on Brian’s tips and suggestions for parents, special educators and teachers. Stay tuned as he takes a heart wrenching exploration into empathy and emotional connectivity.
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.
Back in 2008, we referred to ourselves as the “Fairly Odd Family”. This was in part due to the boys’ affinity for the animated show, “The Fairly Odd Parents”, but also in greater part due to the fact that we just rolled differently than other families. We were (and still are) quirky, off -the-wall, and a bit wacky. Evan had renamed himself “Sevan”, and would only respond when addressed as such. We built and decorated cardboard boats and paddled them in an annual boat float competition. We had a trampoline in the living room of our apartment (with a loft ceiling, thank goodness). Evan’s OT had recommended a trampoline for him since the beginning of therapy, and I didn’t want him to miss out on needed therapy just because we were spending a year in an apartment. We basically marched to our own drum, and it worked for us. Still does.
In September 2008, Brian approached us, all excited about a contest he had seen on Nickelodeon. It was called the “Wii Fit Family Challenge”, and the winning families would receive an all-expenses-paid trip to Florida. The sole requirement was to submit a short video showing our family, in action on the “Wii Fit” or engaged in another fitness-related activity. Since we didn’t own a Wii Fit, we opted for one of our favorite activites…geocaching. In the spirit of Floor Time (joining in their interests and engaging in activities about which they were excited), I wrote up a simple script. The boys had fun memorizing and acting it out, and off we went to videotape.
Ultimately we were not selected as “Wii Fit Family Challenge” finalists, but it was a great day…for a hike, a geocache, a few laughs, and just for being together.
“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”.
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
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.
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.
And raising ASD kids is one of the most stressful parenting circumstances.
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.
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
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.
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.