As we continue to recognize Autism Awareness Month, we want to share with our readers a wonderful article from “on the minds of moms”.
mary lou dahms & kate dahl: you just do
http://www.onthemindsofmoms.com/mary-lou-kate-you-just-do/
story by sheri kleinsasser stockmoe
photos by rialee photography
The time flies as we talk. And with each passing minute I become more impressed with this mother-daughter team. I think I could listen to daughter Kate speak for hours. She has a beautiful confidence as she eloquently shares all she’s learned in the last decade. Kate has rearranged her professional career to meet the needs of her family and in return has found a voice to help others. Her mom, Mary Lou, looks on with an appreciation in her eyes that goes further than a mother’s love; it’s a combination of respect and pride. Mary Lou dedicated her professional career to working in the non-profit world, and while she is now retired, she shares her “dream,” explaining it with the zealousness of a recent college graduate ready to change the world. It’s amazing that the spark in both these women is the result of the challenges and gifts of an 11-year-old girl.
Around October 2007 is when the changes started in Emily, Kate’s daughter. “She was about 18 months old and daycare started to notice things,” Kate remembers. “Things like spinning in circles, and she didn’t respond to her name.” Mary Lou remembers starting the garbage disposal in the kitchen and Emily not reacting at all.
“I thought maybe she had hearing loss or a hearing disability,” Mary Lou says. But it wasn’t a hearing issue.
“May 18, 2008, we got our diagnosis,” Kate says. Emily was diagnosed with autism. “It will be almost a decade now that we have had this diagnosis, and it’s been a real different kind of rollercoaster.”
Per the WebMD website [www.webmd.com]: Autism is a complex neurobehavioral condition that includes impairments in social interaction and developmental language and communication skills combined with rigid, repetitive behaviors. Because of the range of symptoms, this condition is now called autism spectrum disorder [ASD]. It covers a large spectrum of symptoms, skills, and levels of impairment. ASD ranges in severity from a handicap that somewhat limits an otherwise normal life to a devastating disability that may require institutional care.
According to the Center for Disease Control and Prevention, 1 in 68 children in the United States is autistic. The prevalence is also higher in boys [1 in 42] than girls [1 in 189] and it knows no racial, ethnic, income, social, or educational boundaries. Children with ASD have difficulty communicating as well as understanding what other people think and feel. They may display repetitive body movements, be resistant to changes in their routine, and be very sensitive to sounds, touches, smells, or sights that seem normal to others. While some people with ASD are cognitively impaired to a degree, they may have unusually advanced skills in other areas such as art, music, or memorizing facts. Symptoms of ASD typically appear in the first three years of life. “We didn’t know anything about autism,” Kate recalls of the early days of Emily’s diagnosis.
Emily’s diagnosis was difficult for grandma too. “In the very beginning, my mind went immediately to what does this mean that she won’t be able to do?” Mary Lou recalls reflecting on the activities her four children partook in growing up. “And then I thought, ‘can’t go there!’ And together we decided we wouldn’t let anyone ever tell us what Emily will never be able to do, or what she can’t do.”
two worlds
Could she do this…could they do this as a family? Kate wondered about herself, her husband Ken, and their two sons, Noah and Ben [then ages 8 and 3, respectively].
“I still question if I can do it,” Kate admits with a smile. “But you just have to do it. They’re your kids no matter what.”
Her first step was educating herself. “I started reading anything and everything…whether it was fictional, harmful or not harmful, because we just didn’t know anything about autism,” Kate says. Kate and her husband tried different approaches, perspectives, and attitudes. “Finally, I landed on this one Facebook page called Diary of a Mom,” Kate shares. Jess, the founder of the page, is a mother of two girls, one with autism and close to Emily’s age. “Her perspective, how she viewed things, and how she let her child be her own neurology, really resonated with me. From her I picked up different autistic authors, autistic writers, autistic bloggers, and just started following them and how they use autism positively in their world.”
Kate says one of the biggest discoveries was understanding how autistics interpret the world differently than neuro-typical people do. “Emily smells things we don’t smell. She sees things we don’t see. She sees them in different perceptions. She notices different things and she’s very attuned to people’s feelings. So if I’m anxious, she’s anxious,” Kate explains. “Knowing all of this allowed us as a family to stop trying to fit Emily’s square body into a round hole. Instead we’ve just shaved off our edges and became more adaptable.”
This adaptation has also changed how Kate sees the world. “All behavior is communication,” she explains. “Even small things like when I’m driving and instead of being mad at the lady that cut me off, I think, ‘well, maybe she’s on her way to a therapy clinic,’ ‘maybe her mother is dying,’ ‘maybe she’s not feeling well.’ You never know what’s going on behind the scenes with people. The outer perception is not always what’s right.”
Kate acknowledges that to an outsider Emily can appear to be not listening and is sometimes aggressive or loud, but this isn’t Emily being unruly, nor a discipline problem. Rather, it is Emily working to acclimate to the world around her. “I have to do what is necessary for her neurology to live the fullest life possible,” Kate says. “Not the way I want her to live, but the way she needs to live to be a successful autistic person.”
“I’m probably a better parent than I was when Kate was growing up because of what she has taught me about Emily,” Mary Lou says. “I am very much a problem solver and a nurturer and I don’t like conflict, but in this case I’ve tried to really default to Kate. I can’t tell her what Emily should be doing; she knows a whole lot more than I do.”
Mary Lou also thinks she’s a better grandparent because of Emily, too. “She has enabled me to be calmer, believe it or not. When she would first come over I would just be on edge. I couldn’t take my eyes off her. Now when she’s over here she takes command of the kitchen table, and she’s got her markers out and her earphones on and the TV going, and I busy myself in the kitchen and just enjoy her company.”
Emily’s diagnosis also resulted in a career change for Kate. She currently has four different part-time positions she dedicates herself to that offer her the flexibility she needs to accommodate Emily’s schedule and still provide her the satisfaction of earning an income and making a difference. Four days a week she takes care of three, four, and five-year olds at Weekare Childkare Center. Two nights a week she works with the Fargo Park District’s adaptive programs and Saturdays she manages the Red River Valley Asperger-Autism Network’s Legos and More Program.
The Legos and More program is something Kate is very passionate about. While attending an autism conference she heard a panel discussion of autistic adults. “One of the questions was, ‘when did you notice that you were different?’” They all said third grade. All of them,” Kate remembers. “So I want to start getting kids at the fourth, fifth, and sixth-grade level just hanging out. Even if they don’t play with each other, necessarily, but they could play board games, sit and draw, do a craft together, and incorporate all their abilities and their disabilities.” That is what Legos and More is offering. While parents attend the weekly support group, the kids are in the next room being supervised. “Let’s catch them earlier so they know how to, somewhat, navigate social interactions so by the time they get to middle school and high school they’re at least acclimated to social situations. That’s just what they need. To get together and notice everybody’s quirks and non-quirks. Everybody’s so normal that they’re different. Everybody’s so different that they’re normal. And just hang.”
her voice
Emily currently attends Eagles Elementary’s Autism Academy and Kate is instrumental in crafting her IEP [Individual Education Plan], which is a legally binding agreement that dictates Emily’s curriculum and how she will be taught. “My three goals for her are to communicate, regulate, and advocate,” Kate explains. “Math, reading, social studies, George Washington’s the first President, that will come, but none of those will come without meeting those three goals.”
Kate emphasizes that Emily must learn to communicate, whether it is with sign language, writing things down, or using an alternative communication device or app. Then she needs to know how to regulate herself, how to calm her emotions and know when she needs to exit a situation before having a meltdown. And, lastly, Emily needs to be able to advocate for herself, knowing her gifts and limitations.
“You can’t be afraid to speak your mind and say your piece, and dictate what you’d like for your child,” Kate says. “For years nobody believed me that Emily was learning how to read and speak through videos.” But she was. Emily learned to turn on the closed captioning of her favorite movies and to navigate the DVD remote to speed up, slow down, and pause scenes, watching the same scene over and over again until she had the movie memorized verbally, and by reading it. “She knows literally hundreds of movies and videos and she can read them. But nobody ever believed me because you don’t let kids watch videos all the time, you don’t let them just sit there with their face in their iPad!” It wasn’t a big selling point, but Kate incorporated iPad time into Emily’s IEP.
“When you’re first diagnosed, you just have no idea. People say ‘you have to do this.’ And you follow, but then you find out that you have more choices, more options, more of a voice than you thought you had. I’ve actually sculpted her public education more so than a lot of people, because I don’t take no for an answer.”
“I have always said, since this started, that Emily has brought out the best in Kate,” Mary Lou proudly says about her daughter. “I never would have thought she had this in her. This courage. This strength. This ability to be a voice. I sit in on those IEP meetings and there is nothing that gets by this woman.”
their place
Mary Lou opens her simple, spiralbound notebook and enthusiastically shows me the sketch she has laid out. “We have a dream…well, we have several,” she clarifies. “But the big dream we have is to have an independent and semi-independent residence for adults on the autism spectrum. And It’s not a group home.”
The complex will have multiple individual apartments that will have more of a home feel than an institutional set up. Two to three non-autistic individuals/couples will live on site, offering support and supervision to the residents. Mary Lou is working with a non-profit in Omaha called Sheltering Tree that offers a similar facility for adults with Down Syndrome. Now Mary Lou provides her knowledge of marketing and public relations in the nonprofit world and in return Sheltering Tree provides all the details of building and running their facility, as well as things they would do differently.
Mary Lou is enlisting the services of her son Scott, an architect and construction company owner, to provide the design and rendering of the building. “I want to drive up and see gables, and a front porch, and these apartments in the back should look like townhomes,” she explains. The complex will also provide an outdoor, secure, common space where residents can have a barbeque, shoot hoops, or kick around a soccer ball. “They can socialize with others who are on the same playing field.”
Mary Lou and Kate try not to look too far into Emily’s future, but they know the concerns loved ones of children on the autism spectrum can experience. “If I hadn’t found out about Sheltering Tree, I would’ve always wondered, ‘Where is she going to live? What’s going to happen to her?’” Mary Lou confesses.
“There are some things you just have to start thinking about, like guardianship,” Kate says. “When they turn 18, you have to know the process, the paperwork, and the money required to gain guardianship over your 18 year old to make medical decisions or to make sure that they can pay their bills, or take a bus, or things like that. I don’t dwell on it, because if I did, then I would be a wreck.”
Harbor Homes will offer loved ones peace of mind and residents a community of friendship and support. “It’s going to take money. It’s going to take work,” Mary Lou stresses. But she also sees the need and the initial positive feedback she’s received when sharing her dream will make this dream a reality. “I’m one of those that says, ‘don’t tell me we can’t do it…we can do it!’”
just know
Navigating the journey of an autism diagnosis for a decade now has afforded Kate and Mary Lou the wisdom of time and experience. “First,” Kate advises parents of a newly diagnosed child, “they are the same exact child they were the day before you got your diagnosis. Nothing’s changed. Now you just have a name for it.”
Kate says the autistic existence is truly an entirely different world, but you can’t cram a square peg in a round hole because eventually something will break. It’s easier to change the mold than to change the child to fit the mold. Kate has found great advice from adult autistics, whether in person here in Fargo or in the number of books she has read written by autistics. “I can be female like my daughter, I can be Irish German like my daughter, but I will never, ever be autistic,” Kate says of the beneficial perspective she has gained from these resources.
“And don’t be afraid,” Mary Lou adds. “If you are noticing any behaviors, if you think there is something, explore, explore, explore, because the sooner you do the more help you’ll get. Don’t be afraid. If you’re afraid of that diagnosis, you’re going to go untreated, un-helped for an awfully long time, and miss out on a lot.”
Kate also points out the importance of trusting your gut. “Sometimes the doctor’s not right – not to discredit them – but sometimes they just aren’t right,” she says. “You have to go with what you feel is best for your child. And if your child’s not responding to a therapy then maybe you need to rethink something. I say just to remain open. The path that I wanted for my daughter is not her path right now. And that’s okay. Everybody has a different way of doing things.”
And you will have tough days. “Self-awareness is excruciatingly important,” Kate says. “I’ve gotten to a point when I have advocated for myself enough to know what I can and cannot do and I’m not afraid to say no. Use the resources available in our community, like Red River Valley Asperger-Autism Network, Pathfinder Services, or Family Voices. And find your tribe of people that can listen to you when you need it.”
Mary Lou is a big part of Kate’s tribe and her lifeline on a bad day. “I call my mom and she’s getting better at not fixing it. Just listening, which is all I really need. Just to vent, swear a lot, cry, and then I exhale and keep going,” Kate says with a smile. “I think you’re allowed to give yourself that little pity-party moment and then get on with it,” Mary Lou says. She also reminds her daughter of all the successes she has had and how far Emily has come.
“She has an ability to read music, and an aptitude for art,” Kate says of Emily. “She can tell the difference between a Van Gogh, a Monet, and a Warhol.” Emily can also identify a melody and knows if it is composed by Mozart, Beethoven, Strauss, and the like. Next year in middle school she will be learning the clarinet.
“She’s amazing,” Kate says with a sweet smile as she describes Emily. “She creates her own joy. She’s going to follow whatever she wants to do in the future. After all the nevers people gave me when she was younger—she might never wear underwear, she might never speak, she might never be able to live on her own, she might never be able to read, or do this or that—she’s pretty much given them the middle finger on all of those. I just don’t say, “Never!”
you do
“Our whole family has adapted,” Mary Lou says, reflecting on the impact of Emily’s autism. “Our four kids, their spouses, and nine grandchildren…we’ve all learned a lot. When the grandkids are together in the summer, they kind of know what Emily’s little quirks are, but then we also know what everyone else’s are.”
Mary Lou and Kate have also seen their relationship evolve. “It has strengthened it. It has made it better,” Kate declares. “I think we’ve become better friends,” Mary Lou adds and Kate agrees.
They are a good team, supporting each other and reflecting back the common strengths they share.
Six years ago, Kate’s grandmother, Mary Lou’s mother, passed away. Kate watched in awe has her mother traversed such a personal, emotional time with grace and strength, but she also began to consider her parents’ own mortality. She shared the experience in an essay:
…I placed my hand on top of my mother’s, exhaled and began to tell her my fears. “Mom, how am I going to do this someday? How am I going to do this for you? For Dad? I don’t think I can…I hope I don’t let you down, I pray to God I am strong like you. I watched you, and you were amazing—I hope I am amazing for you.”
And you know what? She said to me what I have said to more people than I can count when they ask me how I do what I do—how do I have a child with autism—she said to me,
“YOU JUST DO.”
…You do what you do because that is what God asks of you, it is what you do because you love.
I am the daughter of an incredible woman, who is the daughter of an incredible woman, and will live up to the standards they have set, for it is what I do…
(image description: Three pictures are combines. One picture shows Mary Lou who has short red hair with glasses with her daughter Kate next to her. Kate has long brown hair with a touch of red. Kate also is wearing glasses. The words “you just do” is just above their picture. To the right is a picture of Kate and her daughter Emily. Kate and Emily are sitting on an ottoman. Emily has long dark hair. She is wearing a pink short sleeved top with a pink orange skirt, pink striped long socks and matching tennis shoes. Emily is holding an ipad. Kate is sitting right next Emily. Kae has a darker pink long sleeve top and black pants. The lower right picture shows Mary Lou looking at Katie and smiling. Emily is smiling as well.)
