It’s common for moms of young kids with autism to share their stories. But those babies grow up into teens and adults living with autism, and parents experience new struggles. Educator Christine Weiss knows this firsthand. Her son, Marston, is 27 years old, and she recently shared her journey — documented in her memoir, Educating Marston: A Mother and Son’s Journey Through Autism — with LittleThings.
“At the time of Marston’s diagnosis, the rate of autism was approximately 1/1000, and in the 1950s/60s it was approximately 1/10,000, so there was not the information there is today,” she explains. “No Google. No internet. The incident of autism today is 1/44 or 1/27 boys. This is a devastating statistic.”
That’s exactly how Weiss and her husband, Eric Weiss, felt when they initially reacted to Marston’s diagnosis. “We were devastated, confused and quite frankly overwhelmed,” she admits. “We discovered Marston had a diagnosis of autism when we made an appointment with a pediatric neurologist for an evaluation. Marston at the time was missing many important milestones, and we could not understand the problem.”
She elaborates, “Everyone experiences happiness and sorrow, anger, joy, fear, surprise, loneliness. Kids on the spectrum feel just as deeply, but they often sound different, have more issues with confidence, and they don’t know what comes after ‘hi,’ making their ability to focus and succeed in social situations hard. With Marston, I’d start every morning believing today was the day he was going to look into my eyes and really want me. He’d reach for me, smile for the first time. Walk. He’d say, ‘Mama,’ ‘Daddy,’ or even ‘ball.’”
But that didn’t happen. “By 1998, when he turned 3, I’d uttered that same old prayer a thousand times, and I was more determined than ever to shatter the glass wall that separated my son from the rest of the world,” says Weiss.
Moving forward, she shares, “We educated Marston through programs like the Institutes for the Achievement of Human Potential, vision therapy, the Tomatis method, Marion Blank’s approach to reading, hippotherapy, balloon dancing, and the list goes on … until we discovered stem cell replacement therapy. Love, faith, hard work, and teamwork have taught Marston how to strike up a conversation beyond the word ‘hi’ and do so much more. The pain, obstacles, and victories over the last 24 years have brought us one step closer to Marston living a life of purpose with as much normalcy as possible. We’ve cracked the glass wall, but we believe stem cell replacement therapy will ultimately shatter it.”
One thing that hasn’t changed since Marston’s diagnosis is the balance needed to raise a child with autism. “The daily life of a mom with a child with autism is impossible to describe, especially if you are also faced with raising other siblings,” admits Weiss. “Our life consisted of school, therapy (speech, occupational, sensory learning), playtime, riding in the car to each session, dinner, bedtime … repeat! Summers were filled with flying to experts all over the country that could help Marston and adding in new therapies. I have not even added in the care for other members of the family as well as a relationship with my husband. It is a difficult journey and not for the weak of heart.”
Now that Marston is 27 years old and highly functional, things are much easier. “I personally believe putting in the time earlier and laying the foundation helped tremendously to get him to where is today,” confides Weiss. “Marston lives by himself in an independent living facility for special needs adults. Marston drives, cooks simple meals, does his laundry, shops, etc. There is a mentor who checks on him twice a week, and I have a life coach who continues to help improve his daily living.”
Now that she’s successfully navigated raising a child with autism, Weiss shares tips for other moms who are seeking to balance work and life at home while doing the same:
- Find good help and stick to a routine: “I know I personally like a routine, but Marston thrives on one. There is such comfort and balance in a daily pattern for your life as a human being.”
- Get good child care and find your people: “I went to a local college to the education department, specifically those students interested in special education. I spoke to the department head and inquired about their best students. I offered them a job.”
- Be flexible and let your work know your situation: “Be honest. Most people are compassionate and will help to accommodate. This is the type of environment you want to work in.”
- Be patient with yourself and your child: “Conflicts will arise; if you have the first two covered, you will be OK. Your child needs more help than most, and sometimes only mom will do. Be patient. As I always say, ‘The sun will come up in the morning.’”
- Get organized and learn to delegate: “I find the more organized I am, the less the unknown creeps in to destroy the day. I am a perfectionist, and only I can do it correctly. Not true: learn to delegate.”
- Try not to take work home: “I know there are exceptions to every rule; understandably it’s not an absolute. Your time alone with your child is important, and they need your attention and love.”
- Look after yourself: “Take some alone time. I personally would get in my bathtub, light a candle, and soak — a time to gather my thoughts and relax. It is so important to regroup and quiet your mind for a new day.”
She concludes, “My message for new parents who are just getting the diagnosis of autism is to do your own research. Find out as much as you can about therapies and early intervention. What does your child need, and who is the best at providing that, and what kind of results do they see? Do not have fear to face the future; we are all warriors at heart. Every person in this life will face a trauma, cancer, war, disease, and a death of a loved one. With knowledge comes your power, and with prayer comes spiritual awareness.”
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