Fighting to Improve Your Son’s Life

  • By Springible Contributor
  • Reading Time About 6 minutes
  • PostedOctober 9, 2017
  • Category

This interview is the first in a two-part series. Stay tuned for the second piece to find out what Greg and Maya did after they discovered their son's diagnosis!

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Hi Maya, welcome to Springible! Tell us a little about yourself and your family.

I'm Maya, and I'm married to Greg. We met in Denver, CO but coincidentally we are both originally from Chicago, IL! We ended up in Washington D.C. because I had just gotten my public policy degree, so where else does one go? 🙂

We have had many jobs over the years, but at the moment, I'm a proposal manager with a consulting company and Greg is a realtor and part-time home inspector. We also run a non-profit together. Greg does the bookkeeping, engineering and public speaking, and I do the grant-writing, social media, marketing, and administrative work. We pretty much work around the clock, seven days a week, to pay the bills (autism, and the associated medical, caretaker, and therapy bills, costs a lot of money).

Greg with his two children, Max and Delilah.

We have two children, Max is 9 years old and Delilah is 7 years old. Max is autistic and non-verbal. He's a loving boy who enjoys being around people, but he's also sensory-seeking—constantly needing to move, touch, feel, eat, hear—so he pretty much needs a caretaker with him all the time to keep him out of trouble. Delilah is an extremely intelligent girl who adores her brother, is obsessed with coming up with unique outfits for school each day, is probably a little too verbal, and also demands a lot of attention—but in a different way. Max will probably live with us his whole life. When she's an adult, Delilah will probably move back to a city; she is definitely the urban type, although she is very comfortable outdoors, too!

Tell us about your son's birth. When did you begin noticing he had issues?

My son's birth was normal. He was nine and half pounds when he was born via c-section. There were really no problems and, as far as I know, autism isn't associated with birth injuries. But, he started falling behind on his milestones around the time when he should have been crawling. He didn't crawl until 9 months old, and he didn't walk until 15 months. He did talk originally, but not as much as his peers. He could ask for things, comment on something, but he couldn't answer questions. He eventually lost his ability to speak at about the same time he entered the D.C. Public School System.

Max used to love twisting cords (electrical cords, belts, strings on toys--anything with strings!). Max would plug and unplug electric cords from the wall—not an ideal activity for 2-to-3 year old. He never really played with toys or games, so it was always hard to keep him occupied in traditional ways. He mostly marched around with various household objects (something that non-autistic kids also do). I distinctly remember being concerned when I was driving over the 14th Street Bridge in D.C. while trying to get him to sing "Old MacDonald Had a Farm." No matter how many times I modeled the "ee-i-ee-i-o" for him, he couldn't get it right.

How did Max's diagnosis hit you as parents? How did it make you feel?

We had no clue. In retrospect, it's so obvious that he has "classic autism." But we really just thought he had a speech delay, despite all of his other quirks. Max was our first child. We didn't know what to expect, we didn't know what "typical" looked like on a day-to-day basis... Until we had our daughter. Max was diagnosed right before his third birthday, when Delilah was ten months old, but the differences between them were startling, once we knew what we were dealing with. His diagnosis hit us hard, since we weren't expecting any sort of label. We had a birthday party scheduled two weeks after his diagnosis, which had been planned since beforehand. That was the last birthday party we ever had for him, as we realized that he couldn't handle crowds or games. And he wouldn't be keeping up with the peers of his that were invited to that party, which would make those events depressing to maintain over time. (We now take him out for birthday "experiences," which everybody enjoys--such as a weekend at Great Wolf Lodge. These altered holiday traditions are another class evolutionary experience for special needs families)

Another parent told us later that she suspected he might be autistic, but didn't want to tell us in order to give us a few more months of blissful ignorance. At the time I remember feeling very angry with her. They always say that early intervention is best. And we will always wonder if we could have preserved more of our son's skills by bringing him to therapy sooner. But looking back on it, perhaps she was right with regards to the blissful ignorance. For parents of children who receive any sort of serious diagnosis, there is always a "Before" and "After." You look back on photos from the before and remember the type of person you were, as a parent, before—the dreams, assumptions, and expectations you had, which looked a lot like those of your peers. Then there's the after version of you, which is a whole lot more exhausted, cynical, and limited in your expectations and dreams. So part of me is glad I had the before for about three years of Max's life.

Over time what did that lead you to do?

Let's just say that we were public, loud, and crafty when it came to publicizing what was happening to our son at school, along with highlighting other special education classrooms in D.C. We were also part of a legislative effort with the D.C. Council to change some of the policies and regulations surrounding special education in D.C.

You're passionate about employing people with disabilities? Why?
Our current education system in America schools children with intellectual and developmental disabilities (often inadequately, due to lack of resources) until graduation or “transition.” Then, these individuals are ushered out of the arms of the school system and into the bureaucracy of the State. The state stops providing the day-time services that many families have come to depend on, and families suddenly find themselves wondering how their grown children will be safely occupied and looked after for the rest of their lives.

 

Leaving this population out of the workforce represents a wasted opportunity to put able-bodied people to work (and also give their caregivers back some hours in the day to run errands or have some respite). Everyone should have the opportunity to use what skills they do have to be productive and gain some satisfaction in the very act of working and earning a paycheck. We believe that building this community—with compassion and understanding at its core—will enable us to build the dignity, character, and skills within our employees that can help them make a real, meaningful, and fairly paid contribution to our society.

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Find out what Greg and Maya did after they parted ways with the D.C. public school system!

 

 

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