Autism Moms Who Rock!
by Jamie Pacton, MA
Autism Asperger’s Digest | May/June 2013
Jamie Pacton is blown away by these Autism moms who rock, and all they have accomplished in such a short time.
Nicole Schumacher, wife of Paul and mother to Paul Jr. (14), Andrew (11), and Brooke (5), is the founder of love, Andrew—an autism foundation whose tagline—Believe It’s Possible—is the cornerstone of that overall mission” (loveandrew.org). The Schumacher family is usually associated with their custom homebuilding business, but it is now also known for fierce determination and tireless autism advocacy. Although Nicole has a PhD in psychology, it is through her youngest son Andrew, who was diagnosed with PDD-NOS (pervasive developmental disorder–not otherwise specified), that her work with autism really blossomed.
What were Andrew’s early years like?
It was a terrifying time in my life. I couldn’t take him anywhere. He would not respond to his name and would run off, which was a big safety issue. I had the strangest feeling of loss; I would think, “You have a child physically in front of you, so how do you mourn the loss of a child who’s still there?” What I realized was, “I can’t parent him in the typical way, so I’m going to have to do something unconventional!”
What is Andrew like now?
He’s the easiest child I have! Now he’s in fourth grade in a regular classroom, although he leaves the classroom for certain things. And he has friends. Every morning he gets up, takes a shower, makes his own food, and is a part of family life. We still work on many things, but he doesn’t have tantrums anymore, and he’s very affectionate and sweet.
Which programs helped Andrew?
I found the Son-Rise program first (autismtreatmentcenter.org). It really helps parents help their kids. I set up a home program and we worked with him tirelessly. After that, we also started working with Brain Balance, which is a neurological hemispheric program (brainbalancecenters.com). They test the child on factors like eye movement, balance, and other things that might indicate brain function on one side of the brain or the other. We still do Brain Balance exercises daily, and Andrew has shown great improvement.
What are your goals for love, Andrew?
Our autism foundation love, Andrew is intended to help school systems better learn to help and accept children on the spectrum. Through education, training, and exercises like replicating the sensory overstimulation a child with autism faces, we’re trying to reverse the idea that kids with autism are just behavior problems who need to be disciplined for things they cannot help. At Andrew’s current school, they have seen his struggle and know how far he’s come. They treat him like he’s part of their family. That’s the attitude we’re hoping to foster in other schools.
What are some of your long-term family goals?
Of course we want to grow the love, Andrew foundation and continue to help Andrew develop. We also hope to start building homes for families of kids with autism. Many people in the building community are willing to donate household components—like special bathtubs, for example—that can help a family create a home that is less challenging for a child with autism to live in.
Jess is the voice behind the popular autism blog Diary of a Mom (adiaryofamom.wordpress.com). She and her husband, Luau, are raising two daughters: 11-year-old Katie, and 9-year-old Brooke, who has PDD-NOS (pervasive developmental disorder–not otherwise specified).
How did the diagnosis change your family’s life?
First, it gave us what I call the keys to the toolbox, offering us invaluable insight on how to help Brooke learn, mitigate some of her toughest challenges, and leverage her incredible talents and skills (and sense of humor!) to become the amazing little human being that she is today. Second, it gave us the keys to the village, an entire community of people who have walked a similar path. This was priceless for those of us who love her, but it’s also invaluable for her. The idea that there is a group of people who have traveled this road ahead of her—who are waiting to welcome her with open arms, who have looked at the world through a lens that is similar to hers. This offers me comfort like nothing else can.
What do you get from writing Diary of a Mom?
In addition to a place for me to process the overwhelming moments, it’s also become a beautiful living, breathing community of people on the spectrum, those who love them, and a few who found it quite by accident and never left. I am so grateful for each and every one of the denizens of the Diary village. As it says on the blog’s About Page, “It is a sense of community that makes the good times sweeter for the sharing and the hard times more bearable for knowing that we’re not alone.”
What are some of your favorite posts?
“Welcome to the Club” is probably my all-time favorite. I really like “Person First” as well. For me, it’s a great illustration of my evolution as my girl’s Mama—from a parent whose understanding of autism came from the outside to one whose insight comes, as much as possible, from the inside. “D Day” is another one. It’s not my best writing by a long shot, but the message is an important one to me. A diagnosis does not change your child. You leave the doctor’s office with the same awesome kid you went in with. The only difference is that now you have those precious keys that I mentioned earlier.
What have you learned along your journey?
To slow down, to open up, to greet everyone with compassion and patience and an open mind. That words are not always necessary to communicate, and sometimes they muddy the message. To treasure varied perspectives, to reserve judgment, to celebrate each and every victory no matter when or how it comes. To reject timelines and so-called norms, to eschew pretense and celebrate all that is gritty and real. To ask for help and to accept it with grace. That everyone—absolutely everyone—has something to contribute and that if we take the time to help dig for it, we will all be richer. That words matter. That the way we talk about autism informs the way that people perceive our children.
What advice do you have for parents of a newly diagnosed child?
Remember that a diagnosis does not change your child. No one word has the power to determine the trajectory of a life. Take time to digest it all, then jump in with open eyes and an open heart. Seek out varied perspectives: listen to parents and doctors and therapists, but above all seek out adults on the spectrum who can offer insight from the inside out. Find the village—for you and your child.
Erin and her husband Colm are parents to Jordan, Marcus, and Brendan. Marcus was diagnosed with moderate/severe autism at the age of three, and now he’s eight years old. Erin is already thinking about the time when “the school bus stops coming,” and she worries about what will happen to all the children with autism once they hit their adult years. In addition to creating a nonprofit organization, 3 Irish Jewels Farm, which will provide assisted living for adults with autism in North Carolina, Erin has published a children’s book, The Bluebird Dance, with 100 percent of the sales benefiting the farm.
How does Marcus’s autism affect him?
Marcus defies a lot of the stereotypes of autism. He makes eye contact with me, and he loves cuddles, back rubs, and hugs. I once read something about the comparison of backpacks and autism. Everything has to fit into the backpack and be carried. If it isn’t useful, it isn’t taken. Marcus’s life is like that: his backpack is extremely limited. There’s only so much we are going to be able to pack into it for him, so each item has to count. Must he learn to add 2 + 2 by hand? No, he can use a calculator. Does he have to learn how to define words? No, he needs to know how to communicate.
What are your dreams for 3 Irish Jewels Farm?
3 Irish Jewels Farm will provide assisted farm living and day programs for adults with autism, and summer and day programs for children with autism. Residents, surrounded by peers and caring staff, will have opportunities to work, participate in leisure and recreational activities, and learn skills.
The farm will be built in several phases. Once land is acquired, the adult day programs and horticultural programs, along with the children’s summer and track-out programs, will complete phase 1. Phase 2 will consist of a capital campaign, with plans to build several one-story homes clustered around a communal area. The residential program will be self-sustaining, partially relying on funding from Medicaid, Medicaid HCBS (Home and Community-Based) waivers, Social Security, and local sources.
What role will you play at 3 Irish Jewels Farm?
I will be doing much of what I’m doing now: designing, developing, and implementing strategic plans. I will also be responsible for the day-to-day operation of the organization, including managing and overseeing committees and staff and developing business plans in collaboration with the board of directors.
I’d like to think that Marcus is a farm boy at heart since he loves to be outside—running around, swinging, being at one with nature. He loves animals and is absolutely enthralled with horses. So, my ultimate dream would be to mesh those two dreams together—my dream for Marcus’s future happiness and my dream for 3 Irish Jewels Farm to get off the ground. I envision Colm and I living on 3 Irish Jewels Farm in the main house, Marcus living in one of the individual homes, and providing a place for adults with autism to call their home.
How can parents set up similar farms in their communities?
First, take a look at, become familiar with, and get to know the members of Agricultural Communities for Adults with Autism (ac-aa.org). Learn how to operate a nonprofit organization and how to start one from the ground up. I relied a lot on the book How to Form a Nonprofit Corporation by Anthony Mancuso. Hire an attorney to help with getting your tax-exempt status. Finally, check out Bittersweet Farm’s WISDOM program (home.tbbs.net/semisweet/store/wisdom.html), a wonderful webinar series on starting a nonprofit farm program serving people with autism.
What have you learned from Marcus?
I view my relationship with Marcus as a journey. He has brought me a new outlook, a deeper understanding, a new appreciation of what patience is all about. And, for the most part, the journey has been beautiful.
Patricia (Patti) Colley Moore is a fearless single mother of two unique boys, Liam (18) and Aidan (11), both of whom have autism spectrum disorder (ASD).
Her husband left her three years ago on Mother’s Day, but in the time since then, Patti’s accepted her new parenting role with grace. An avid music fan and surfer, she encourages her boys to try all sorts of activities like surfing, skateboarding, skiing, and sailing. She travels with them all over the United States, plans to take both of them to Africa this year, and would like to see the world with them in time.
Could you tell us a bit about your boys?
Liam and Aidan are very different, despite both having ASD. We’re a family of individuals who are unique. Aidan is a fiery ball of energy; he’s passionate and mercurial. Liam is my “Buddha boy,” and he tends to go peacefully with the flow of our lives. They both love to draw, write stories, listen to music, and be in the water or snow.
How has your sons’ ASD diagnoses changed your family’s life?
Liam was diagnosed later, at age three and a half, since he was undergoing surgery for a cleft lip and palate. His diagnosis sent me into a deep depression, and I despaired. We had to move from New Orleans (a city I loved, and one where I thought I’d raise my children) to Boston, where there were better ASD services. Aidan got his diagnosis at 18 months, and I was not as surprised because the idea of him having ASD had always been in the back of my mind. For me, having two sons with autism meant that my supreme focus became helping them.
Why did you choose to go into the field of special education?
I think being a parent of children with special needs has given me a toolbox of ideas to try in the classroom. Also, I feel a deep sense of compassion and respect for these children, and I truly believe in never giving up on a child.
What have you learned as a mom to two children with ASD?
First, it’s taught me patience. Everything works out, but it takes time (sometimes lots of time). And it has taught me how different we all are, and I’ve learned to accept those differences with an open mind.
What advice do you have for parents of a newly diagnosed child?
Never, ever give up! Just because something is hard the first time your child does it, does not mean it always will be. These children are amazing—they think so out of the box, and there are no limits to their creativity! My sons have helped me slow down, expand my mind, and appreciate life. This journey is a gift, not a punishment.
After Liam’s first time surfing, one of the surfers said to me: “Autism is like the wave, go against it and you are fighting against something you can’t win, but ride with it, and what a ride it is!”
Jamie Pacton, MA, is a writer, professor, and mother to two boys (one who is on the spectrum). She is also the author of The Early Years column, featured in each issue of Autism Asperger’s Digest.