MEET EMILY OAKLEY: when she saw a need for her nephew, she wanted to help, and in doing so, she realized that strength that comes from community.
What led you to fundraise?
Ethan turns 10 years old this spring! He was diagnosed with autism before age 2 and it’s hard to believe we’ve been trying to meet his unique and intense needs for that long. He has progressed so far from the disconnected toddler that he regressed into after his first birthday. He is funny, mischievous, loving, cuddly, strong, and opinionated. He can communicate his wants and needs with simple words and gestures, and he potty trained 3 years ago! Homeschooling him has been instrumental in his progress but it also brought us down to one income unexpectedly four years ago.
As he has gotten older, bigger, and smarter, we have hit some scary and dangerous phases that require a big, long term solution. Without enough things to keep him occupied at home, he has started to wander off without us knowing. Unfortunately he is smart enough to wait until we are distracted and then he leaves, sometimes without weather appropriate clothing or shoes. The police brought him home one morning while we were still asleep. And another time he made it almost a mile away in less than 10 minutes to a busy road before we caught up to him as the police were on their way. He often bolts as fast as he can because he understands that I would call him back if I saw him. But Ethan does not understand the danger of oncoming traffic and will walk right into streets and parking lot roads without a second thought. He loves going off trail into the woods. He loves water even though he doesn’t know his own limits with swimming. He is in grave danger when he is out in the world without us. We installed some expensive security at home that has helped us catch him on his way out countless other times. But it’s really just a band-aid that can’t be fully trusted. We still have our guard up at all times, night and day. We barricade ourselves in at night using gates with jingle bells attached, multiple alarming motion sensors, and security cameras that alert our phones. The root of the problem is that Ethan needs his stimulation requirements met more fully at home, and he needs a safe room to be in when he is up all hours of the night while the rest of us try (and usually fail) to sleep.
We have the perfect spot for an “Ethan Room” above our garage. We feel it is the best solution for helping our whole family live safely together in our home as Ethan reaches his teen years, and most likely lives with us into adulthood.
How are hoping a safe room will impact your nephew’s daily life?
Ethan needs stimulation most of his day. My sister does a great job of breaking up the days by going on outing after outing. They have the best backyard a kid could dream for, however all of this is weather dependent. In their sweet little home, there is no room for his therapy equipment to be out that also allows the rest of the family to enjoy their day. Ethan also has a very unique sleep schedule, often his body telling him he needs to be awake by 3am. With two younger brothers who share a room, it turns into musical beds so that the rest of the family can try to get a few hours of sleep each night. A room for Ethan would be his equipment could be up and out at all times during the day, turning their home into a haven for them. It also allows a safe space Ethan can be awake at all hours his body needs to, while letting the rest of the family sleep.
What fears did you have about fundraising, and how did you work to overcome them?
Our family STRUGGLES when it comes to asking for help. Putting yourself out there takes a lot of vulnerability and strength. We did it as a family. With our village of friends behind us. We have supported each other through each step and constantly checked in on each others feelings.
What did you learn through fundraising for your nephew?
How strong the community behind us was. Words cannot describe how much gratitude I have for the hundreds of people that have stepped up to support one of the best kids around.
If you could tell the world one thing about autism, what would you say ?
OH GOSH. This is a long one; Let me tell you what the media, official research, and general public do not do a good job of – bringing awareness to what life is like for a good number of autism families on one end of the spectrum. I’ve had many people explain autism to me as ‘cute’ and that is frustrating. My nephew is SO CUTE, but he isn’t autism. He HAS autism. And for a lot of families, autism is long sleepless nights, police scares, missing kids, a lack of communication, a child who can’t tell you what they’re thinking or what they need, therapy nonstop (IF they can afford it), little resources, children in pain who can’t tell you why or how, stressful days, isolation, people staring in public, lack of empathy from others, and so so much more. There are challenges I can’t even begin to explain that my sweet sister and brother (he’s always been more than an in-law) face everyday. They face them silently and with strength that I could never dream of. They give up so much to ensure that Ethan has his best chance at life, as he will live with them through their lives and then his little brothers (and the rest of us) when they’re unable to care for him anymore.
Today I want to tell you that autism is hard for many people. It’s not always just quirkiness, or exceptional intelligence or talent, or just difficulty making friends, or just being socially awkward. The other end of the spectrum can involve little to no speech, late or lack of potty training, self-injurious behaviors, meltdowns, sleep disturbances, co-occurring anxiety and other disorders, and more. And in between all of that there can be a beautiful life lived. Ethan has a contagious smile, a loving spirit, and has taught us all so much.
My sister has always been another mom to me. When I was 14 years old, she became an actual mom. And let me just tell you, she is one of the best ones around. Her oldest son, Ethan, needs a little extra support from us as his family. After a lot of family conversations, my sister finally expressed that they have a big need for a therapeutic place for Ethan in their house.