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.