You probably know someone, or maybe you are the someone, who has a child diagnosed with autism. One in every 68 American children is currently diagnosed with Autism Spectrum Disorder (ASD), a neurological developmental disorder affecting the brain. Symptoms include difficulties with social interaction, verbal and nonverbal communication, and repetitive behaviors. According to the U.S. Centers for Disease Control and Prevention (CDC), most cases of autism appear to be caused by a combination of autism risk genes and environmental risk factors that affect brain development.

Autism can range from mild to severe, and every case of Autism is unique, which can seem daunting. Typically the younger a child is treated, the better the prognosis will be. A range of helpful behavioral, educational, and family treatments are available depending on each child’s specific case. While the diagnosis of autism might be hard, there is hope.

Dr. Cherilyn M. Shurtz, M.D., FAAP of PediatriCare Associates in Sylvania urges parents not to be intimidated by an ASD diagnosis. “Always stay positive and never lose heart,” she said.

“Early detection is so important in getting the services and therapies your child needs to improve long-term outcomes and allow your child to lead a wonderful, happy, and productive life.”

The Faces and Families of Autism

Jackie Draughon, a mother of six,  knew early on something was different with her youngest son Jaxcon, but it became most obvious when Jaxcon began preschool at age three. “He threw objects in class, never stayed in his seat, was unaware of dangers, was easily frightened, barely made eye contact, had a hard time in social settings, became frustrated and overwhelmed with large groups of people, and had frequent potty accidents,” Jackie recalled. By age four, Jaxcon received his official diagnosis: High Functioning Autism.

Working It Out as a Family

Because Jaxcon has a hard time expressing himself, he can easily become frustrated and upset. The sensory overload from a simple trip to the grocery store is often too much for the boy, and family outings are challenging, as he can be unpredictable. Jaxcon’s five siblings (ranging in age from two -13) sometimes have difficulty understanding their mother’s different approach to managing Jaxcon’s behavior. “They get frustrated a lot, but we keep talking about it… they are much more aware of his triggers, and when we are in a stressful situation they all try to help the best they can. Some days are better than others.”

Today Jaxcon is nine and Jackie has learned that his meltdowns must run their course. “I am never very far away in case Jaxcon gets frustrated or overwhelmed. I am his calm. I have learned that High Functioning does not mean easier. I have learned that deep pressure (like a bear hug) helps him come out of a meltdown. I have learned patience and long suffering.  I know that when he says hurtful words he does not mean them. I love him unconditionally,” Draughon explained.

Catie’s resources

For mom Mary Pat Gebers, the warning signs came early. Gebers noticed her fourth child, a daughter, Catie, wasn’t talking and would not respond when her name was called by her first birthday. Nothing conclusive was determined about Catie’s behavior until just before Kindergarten. After being evaluated by her school psychologist, the autism diagnosis was made. “Catie scored very high on the Autism Diagnostic Observation Schedule (ADOS) testing, the gold standard of testing for autism. The higher you score the higher the chance of autism or the more severe it is,” Mary Pat said. ADOS assesses communication, social interaction, and play in suspected cases of autism. She followed up the diagnosis with a visit to Cincinnati Children’s Hospital, where the diagnosis was confirmed. Mary Pat and Catie returned to Cincinnati Children’s Hospital often to utilize the resources there at the Center for Autism Spectrum Disorders.

Early Signs of ASD: What to Look Out For

“Early signs center on lack of social interaction and ‘joint attention’… actions like pointing at things to show others, or looking at things together, such as enjoying a book with a parent. Children with Autism will not look others in the eye for more than a brief moment.”
–Dr. Cherilyn M. Shurtz, M.D., FAAP of Pediatracare Associates in Sylvania.

Keeping it Inclusive

Mary Pat believes Catie was able to grow being in the presence of her peers at school. “Because I work, Catie picked up a lot from her friends in her daycare class.  Routines and schedules provide a sense of security to kids with autism. There are not a lot of options outside of the public schools for children with special needs but I have been very happy with the services Kate gets at school. At age 10, Catie learned to read- she now works very hard at that and can read at a 4th grade level. We are so proud of the work she’s done and how far she’s come,” Mary Pat shared.

“Some people think kids with autism just want to be alone all the time. While Catie does at times want to be alone, she also wants to participate in social activities and have friends,” Mary Pat said.  Now a Freshman at Sylvania Southview High School, Catie recently attended the Homecoming Dance with her friends. 

The noise level was overwhelming, and she left about halfway through, but Mary Pat is confident that by senior year she will be able to stay through the whole event.

With a Little Help From Family and Friends

For parents with a child on the autism spectrum, having a support system and taking time for yourself are crucial.

“Remember to take care of your health,” Jackie said. “I have found great strength and stress relief by following a daily workout program. There are so many high-stress moments and having a healthy outlet is key to keeping you in balance.”

Mary Pat relies heavily on family support. “I’m very fortunate to have three older children (Ryan, 27, Mallory,24, and Evan, 21) who help with Catie, and our families live close enough to come help if we need them.”

Mary Pat encourages parents to keep at it; raising a child on the ASD spectrum is a day to day process. “It is very daunting and overwhelming at first. Keep reminding yourself that at the end of the day it’s your child. The love that you give them is just so important in the whole process. It does get easier, but it’s slow in coming so you just keep at it. Because it’s your child, you will learn to do what you need to do just like you did with your other children. You have that capacity. They grow up. They still mature, and they have typical teenager moments. It is wonderful.”

“There will always be a ton of opposing opinions, but only you know how to love your sweet child and only you know what it is like to raise them,” Jackie said. “Hold tight, stay strong, and be kind to you.”

A Perfect Fit

How to find the right babysitter for your special needs child
By Lynn Adams

I used to say that only a Ph.D.-level child psychologist could babysit my son. It wasn’t really a joke, because that’s what I was at the time, and two close friends and colleagues were his earliest babysitters. Them, and my mom.

This was before James was diagnosed with Autism Spectrum Disorder, when he was an extremely fussy, unpredictable, hard-to-read infant. My main worry was that a babysitter wouldn’t be able to withstand James’ crying, which was long and loud. That he was vulnerable to abuse. Only someone who loved him could do the job.Thankfully, James became less fussy and much more fun to be around. But I remained wary of sitters.

Wanted: Babysitter

With James, the stakes were higher.What was I supposed to do? Hire a “special needs babysitter,” if such a person existed? And how much would that cost? I wasn’t going to call up the teenager down the street, but I thought I could make do with someone experienced, someone older.

I wondered, was an explanation of the diagnostic label— to which I was still adjusting— really necessary for the 60-year-old  lady across the street to put James to bed while my husband and I went out to dinner? Autism Spectrum Disorder can be a hidden disability, not always apparent at a first meeting. A parent has a choice about whether or not to identify their child.

How would you like being introduced to new people with your worst qualities highlighted?

Turns out I probably should have said something. When we got home at 10:30pm, Ms. Veronica was sitting beside James’ crib, overhead light on, singing “Polly Wolly Doodle.” “Does this baby ever sleep?” she asked. “He won’t close his eyes!”

James gave me a desperate look, as if to say, “Doesn’t this lady know how to turn out the light and leave the room?” He was tired of entertaining her

Although less fussy, James still had trouble reading people and being read. Because of his autism, he didn’t communicate typically about really important household topics: sleepiness, hunger, thirst, discomfort, anxiety, illness, basic requests.

So this became my tactic. Instead of using the A-word, I’d deliver a clear, focused message about what made James different. Like ad copy: “You know how most kids yawn when they’re tired? Well, this one runs around  the house like a greyhound.” In this way I graduated from Ph.D.-level babysitters to preschool assistant teachers, Teach for America people, and budding speech / language therapists. That’s where I remain today, when my mom’s unavailable. Most importantly, I troll for sitters at James’ school, looking for people with whom he already feels comfortable, and who know him without my having to explain much.

High Stakes

But no matter how well James does with babysitters, and he does very well nowadays, the stakes are higher because of his autism. Even higher than they are for his younger sister, though she benefits from his higher stakes.

That’s because, for children with autism and other special needs, major routines are all-important. I’m not talking about which book you read before bed, or how many times you say goodnight. I’m talking about how much and when they eat and drink, when they use the bathroom, when and if they take any medication, and when they fall asleep.

A slight variation in any of these can result in such ills as: bedwetting, night waking, early morning waking, stomach upset, and fussiness for days afterward. None of which are a good follow-up to my wild night on the town.

So that’s it. You don’t need an expert, but you do need someone who will keep major routines consistent. Someone who understands how important that is. And that person is most likely to be someone you already know, or someone who has experience with special needs kids. No Ph.D. required.

Once you’ve met the potty / food / bedtime requirement, anything else is extra. At our house, the extras are the best part. When we get home from our wild night out, the kids are in bed, bellies full and bladders empty. The next morning, they wake up happy, ready to share stories of the night’s adventures. Just like we are.

Lynn Adams is a child psychologist turned parenting writer.
Find more of her writing at www.lynnadamsphd.com.

RESOURCES

This whole adventure known as parenthood is wonderful, exhausting and often quite difficult. With additional challenges like behavioral problems, physical disabilities or medical conditions, it can be even harder. Here in Northwest Ohio there are abundant resources available to make the most of every day.

The Autism Academy of Learning

110 Arco Dr.
419-865-7487 | theautismacademy.org

This publically-funded charter school provides year-round educational services to students with autism in an environment that fosters acceptance, trust and success. The Autism Academy of Learning takes a whole-child approach to learning, with all staff working together to meet the unique needs of each child.

Bright Horizon Advocacy and Consulting

205 Farnsworth Rd. | Waterville
419-441-1011 | brighthorizonsadvcon.com

Bright Horizons is  owned and operated by people with disabilities and their family members. They specialize in assisting with special education concerns, such as getting a Individualized Education Plan (IEP) or 504 Plan, modified to meet a student’s needs and helping to ensure it is followed.  They can also assist with advocating for ADA accommodations at college, on the job or in the community and getting disability-related services and benefits. Services are available on a sliding fee scale.

Sensational Kids Daycare and Learning Center

6060 Merger Dr. | Holland
419-724-5434 | sensationalkidsdaycare.com

Sensational Kids offers an alternative schooling option for children with special needs. The school’s experienced therapists and special education teachers work with parents to design a program that will help with each child’s educational and developmental goals. They offer weekly speech, occupational, and physical therapy along with their education to ensure success within their program. Sensational Kids strives to make a difference in the lives of students and their families. 

Lucas County Board of Developmental Disabilities

1154 Larc Ln.
419-380-4000 | lucasdd.info

With a mission of improving life so individuals with developmental disabilities can reach their full potential, the Lucas County Board of Developmental Disabilities
advocates so everyone can live, work, learn, play and worship as equal citizens. They help develop plans for individualized services and support for children, adults and families.

The ARC of Lucas County

3450 W Central Ave. | Suite 354
419-882-0941 | arclucas.org

For more than 50 years, the ARC of Lucas County has been helping people with developmental disabilities find meaningful places in the community. The ARC of Lucas County helps people with life skills training, self advocacy training, monthly caregiver meetings, community resource referrals and more.

National Alliance on Mental Illness (NAMI)/ NAMI of Greater Toledo

2753 W. Central Ave.
419-243-1119 | namitoledo.org

The National Alliance on Mental Illness (NAMI) is an association with hundreds of local affiliates, state organizations and volunteers who work to raise awareness and provide support and education to those affected by mental illness through dedicated support, education and advocacy in the greater Toledo area. Currently, NAMI of Greater Toledo has close to 500 members and offers a variety of support groups and education classes for individuals, and their families, living with mental illness.

Harbor Behavioral Health

6629 W. Central Ave. | 5151 Monroe St. | 4334 Secor Rd.
419-475-4449 | harbor.org

Harbor Behavioral Health, an affiliate of ProMedica, is the leading mental health provider in Northwest Ohio. The mission to improve the health and well being of individuals and families by providing the highest quality compassionate care possible has been Harbor’s purpose for over 100 years. Services include partial hospitalization and day treatment for individuals with developmental disabilities, vocational programs for those with barriers to employment, Developmental and Behavioral Pediatrics, Applied Behavioral Analysis, counseling, psychiatric services and care coordination.

The Autism Society of Northwest Ohio

6629 W. Central Ave. | Suite 1
419-578-2766 | asno.org

The Autism Society of Northwest Ohio provides support, resources, referrals, education and training and advocacy to individuals, parents, and families affected by autism. They serve 12 counties in Northwest Ohio and are an affiliate of the Autism Society of America.

Double ARC

5800 Monroe St. | Sylvania
419-479-3060 | doublearc.org

Sponsored by the Sisters of Notre Dame, Double ARC serves children and their families who are affected by prenatal alcohol exposure. Double ARC provides diagnosis, education, intervention,
advocacy and support.

Sunshine, Inc.

7223 Maumee Western Road | Maumee
419-865-0251 | sunshine.org

Sunshine Communities has been helping people with disabilities live fuller, more meaningful lives since 1950. Sunshine continues to lead the way in helping people with special needs live, work and play on their own terms. The Maumee campus operates a therapeutic riding program, therapy pool, sensory room and an adaptive gym.