Local resources for families and children with special needs and personal accounts of family life with disabilities.
Family Life with a Child with Disabilities
Child-Rearing with Spina Bifida
By Lindsey Melden
Three years ago, I walked into a maternal fetal medicine appointment prepared for a routine ultrasound. What I didn’t expect was for the doctor to walk into the room and announce, “Your child has spina bifida.” No warning or preamble, just a combination of words that immediately jumbled themselves incoherently in my brain. Those words, along with phrases like “low quality of life” and “neural tube defect,” remain seared into my memory.
Jumble of emotions
The next few weks were a jumble of emotions, conversations, and doctor’s appointments. We had to decide if we would choose a new procedure where doctors perform surgery on the spine in utero. We had one week to do preliminary tests and make that decision. We decided against the surgery, but continued the process of transferring our care to Motts Children’s Hospital in Ann Arbor so they could repair her spine immediately after birth.
We reached out to friends and acquaintances in an effort to mentally prepare for this unexpected hurdle. We knew life would be challenging, particularly right after birth when she would require multiple surgeries. We would have been lost without the kindness of parents of spina bifida (SB) kids, the support of our dear friends, and our wonderful family.
Our daughter Joanna was born by c-section on a cold morning in January and, after a brief snuggle and moment to nurse, she was taken to PICU to prepare for surgery. Her spine was repaired within 24 hours, and 10 days later she underwent brain surgery to place a shunt to drain excess fluid that was putting pressure on her brain.
These experiences are now distant memories. When I look at our daughter today, I see a silly kid playing with her sisters, helping me set the table for dinner, and rolling into preschool in her bright blue wheelchair like she owns the place.
Snowflake condition
Spina Bifida is sometimes called a “snowflake” condition, which means that even though it starts as a defect to the spine, it manifests in each person uniquely. For our daughter, SB has affected sensation in her legs, which means she uses a wheelchair, and most likely will for the rest of her life.
She also sees weekly therapists for help with speech, motor skills, and strength building. Her biggest challenges often have less to do with her actual disability and more to do with how accessible the world is around her.
Even though our lives have changed in the last 3 years, I could never have imagined how sweet and ordinary life would be. If you come to our home for dinner, you hear music playing and see toys on the floor. You’d see three loud, crazy kids trying to get their homework done, dad keeping the peace or setting the table, and one tired mom attempting to make dinner and laughing with
her kids.
Becoming a parent
When you become a parent, you are surrendering yourself to the creative force of the universe. You become a conduit for a biological process that has been occurring for millions of years. You have no idea who your child will grow to be. This is the magical and terrifying truth. But what makes it truly exceptional, what makes my family exceptional, is not the fact that my kid uses a wheelchair or that my kid has different challenges than yours. It is our love. Our love is exceptional. And every single person who endeavors to walk this journey of making and growing humans has the ability deep within themselves to live in this love. Disabled or nondisabled, our children call out the best in us, and the best we can give them is our love.
Our Favorites
Therapists: Rehab Dynamics
School: Early Childhood Program in Washington Local
Church: Trinity Episcopal in downtown Toledo
Playground: barrier-free playground at Secor Metropark
Libraries: King & Mott branches both have wide open play spaces
Playdate: the Family Center at the TMA
Books with diverse perspectives
By Lindsey Melden
One of the things I absolutely love about reading with children is getting to walk in someone else’s shoes together. It’s the reason I make sure to read books with characters who look and live differently than our family.
Our kids can unintentionally become insulated by our family, and sometimes even our wider community, but in a story they can see what life is like for someone from a different country, culture, religion or background. They can see how a child who uses a wheelchair gets to school or how a child with a cochlear implant enjoys music.
Reading stories about disabled people helps to take away the stigma of visible disabilities and allows a child to see similarities with all kinds of people. Appreciating our differences and understanding our similarities are the foundations of an inclusive world.
If your child happens to have a different body or way of navigating the world, these books offer that unique comfort that comes from knowing that you are not alone in the world. Here are some of our favorite books that include characters with disabilities.
Susan Laughs by Jeanne Willis
This sweet book shows readers a happy little girl whose physical challenges never stop her from being herself. Nondisabled children will see that children with disabilities share their abilities; they may just do accomplish things differently. Experience Susan’s whole day, the good and the bad, and how her disability is just one part of who she is.
When Charley Met Emma by Amy Webb
This book is a treasure. Written by a mother of a child with limb differences, it goes right to the heart. When Charley visits the playground, he meets Emma, a girl with limb differences who gets around in a wheelchair.
He doesn’t know how to react at first, but his mom helps him remember that different is just different and different is ok! This book is understanding and empathetic. It can give you the words to help your family talk about disability, kindness, and friendship.
Not So Different by Shane Burcaw
Shane was born with spinal muscular atrophy, which means he doesn’t grow the way most people do, and his body and wheelchair often prompt many questions from friends and strangers alike. This book answers the most common questions he receives about his disability in a kid-friendly, and often hilarious, way.
This list includes more stories about disabled people or the history of the disability rights movement.
Little Kids:
- Susan Laughs by Jeanne Willis.
- Beautiful by Stacy McAnulty
- Just Because by Rebecca Elliott
- The Snow Rabbit by Camille Garoche
- The Animal Boogie by Debbie Harter
- I Like Myself by Karen Beaumont
- The Big Umbrella by Amy Bates
- Daniel’s Friend by Becky Friedman
Kids of all Ages:
- Don’t Call Me Special by Pat Thomas
- Not So Different by Shane Burcaw
- When Charlie Met Emma by Amy Webb
- King for a Day by Rukhsana Khan
- Hello Goodbye Dog by Maria Gianferrari
- Arnie and the New Kid by Nancy Carlson
- The Deaf Musicians by Pete Seeger
- The Barefoot Book of Children by
- Kate Depalma & Tessa Strickland
- The Five of Us by Quenton Blake
7 Things to Know About Parents of Children with Special Needs
Different challenges = different needs
By Rachael Moshman
My husband and I adopted our daughter when she was nine years old. She has a long list of mental health diagnoses. We quickly discovered that parenting a child with special needs results in the whole family experiencing a challenging set of special needs. As I’ve interacted with other parents of children with special needs, I’ve noticed that there are some factors that most of us have in common. These characteristics are typically present if the child has any of the following diagnoses, ADHD, autism, physical disabilities, Down syndrome, emotional issues or any other special needs.
We’re tired. Really, really tired. Exhausted, actually. This isn’t an occasional thing for us. We don’t miss out on a full night of sleep once in a while. It’s all of the time. My daughter suffers with insomnia and nocturnal panic attacks. It is not uncommon for her to be awake for most of the night. Even if we do get enough sleep, we’re still run down from all of the energy it takes to manage our child’s condition. Our schedules are packed with doctor, therapy and psychiatric appointments, IEP meetings and trips to the pharmacy. On top of it all, we still have to go to work and keep up with general household duties.
Our brains our constantly busy. We’re always considering possible triggers in every situation, wondering how to explain our child’s unique needs to others and worrying about the future. My daughter suffers from PTSD and seemingly innocent encounters can send her into a meltdown. I spend hours analyzing every one, looking for the trigger and making plans to help her process it and get through it better next time.
We know more about our child’s condition than most doctors. I’ve read piles of books on mental health and my daughter’s specific diagnosis. I keep up with the latest research online. I had to become the expert for my child. I’ve found this is true with most parents of children with special needs. I know a few parents who went back to school to get degrees to become teachers, therapists, social workers and researchers to help other families like their own.
We’re lonely. Our friends and family often have stepped away because our child’s needs make them uncomfortable. Or perhaps we had to step away from them because they refuse to respect our boundaries and parenting decisions. Most special needs children don’t respond well to traditional parenting methods, and our brains may explode if we hear one more time that all our child needs is more discipline. Discipline isn’t the issue–our child’s condition is. My husband’s mother even cut off contact because she found our situation too stressful to be a part of.
We’re fragile. We feel judged all the time. We want what’s best for our child like any other parent and worry if we’re doing enough for them. We often don’t have enough time or energy left to take care of ourselves.
We’ve tried everything. We know you want to help, but if there is a possible solution we’ve tried it. I’ve been asked countless times if I’ve tried “warm milk” for my daughter’s insomnia. We’ve tried everything on a quest to make life easier for our children and families, both conventional and unconventional. We need friends to listen to us and to support us, but we don’t need you to offer solutions.
We’re desperate for normalcy. Yes, we’re overwhelmed and exhausted. Our children have quirks and challenges that often make navigating life challenging, but don’t leave us out. Invite us to your birthday parties, playdates and mom’s night outs. Our participation depends on many factors, but we still want to be included and will do our best to be there and have fun. Vent to us about your problems and share the latest celebrity gossip. Much of our lives are spent inside a small bubble trying to manage our child’s needs. We welcome the chance for some fresh air.
Rachael Moshman is a mother, freelance writer, educator and family advocate.
Find her on Twitter @rachaelmoshman.
The Ability Center
The Next Steps Summer Program, a component of The Ability Center’s Life Skills Program, offers students the opportunity to stay on the University of Toledo campus for 5 weeks where they master everyday tasks such as cooking, cleaning, and doing laundry in a dorm setting. Students are employed at local businesses where they build skills through paid work. Youth develop an impressive resume, sharpen interview skills, and learn how to dress and how to conduct themselves in a professional work setting. Program participants are typically high school juniors, seniors, or recent graduates with any disability. Students must have a goal to attend post-secondary education, obtain competitive employment, or live independently in the community. Not only do students get an inside look at college and the working world, but they also connect with peers, creating lasting friendships.
Managing Motherhood
Parenting through chronic illness
By Kimberly Feldkamp
Parenthood isn’t easy. It’s hectic juggling kids, schedules, spouse, job. Imagine managing all of that…plus dealing with a chronic illness.
That’s the reality for Molly Klima, a 33-year-old energetic mom to three boys, ages 8, 7 and 7. Molly is a hospice social worker and is actively involved with her church. Molly also has ankylosing spondylitis (AS), a form of arthritis that primarily affects the spine, although other joints can become involved. The disease causes inflammation of vertebrae that can lead to severe, chronic pain. She also has psoriatic arthritis, an inflammatory arthritis that occurs in some patients with psoriasis. Swelling in the knees, hips and hands is common for Molly, and she experiences stiffness daily.
“When it’s bad, I’m afraid to put my feet on the floor in the morning because I wonder, ‘Will my legs hold me up?’” Molly explains.
The diagnosis
Molly was diagnosed with juvenile rheumatoid arthritis (RA) at age 11 but relates that it didn’t impact her much then. “I could get my joints drained and I didn’t care because I could still do what I wanted.” Molly’s arthritis went into remission around age 18, and for 5 years she lived pain-free.
When the swelling and pain returned in her 20s, Molly was devastated. “It’s daunting…is this really the rest of my life? It’s come back with a vengeance as an adult and it’s been a long journey of acceptance.”
Right now, there is no cure. With this autoimmune disease, Molly’s immune system is in overdrive; it can’t tell the difference between good and bad antibodies, and she is at an increased risk for other illnesses and infections.
Learning to ask for help has been something Molly has come to accept. “Being a parent with a chronic illness means you have to do things differently. If I push myself too much, I make myself sicker. I have to know my limits and I have to know it’s okay to ask for help. It’s also important to figure out how to take care of yourself — and I’m talking about all parents — amidst the chaos of parenting.”
For Molly, taking care of herself includes a combination of things good for her body and for her soul. She manages her pain with medication and knows when to limit activities. She also watches her diet, following an auto-immune protocol that’s similar to the paleo diet: meat, fruits, veggies and no grains.
Strong support
Thankfully, Molly isn’t alone in fighting this. “My husband has been so loving, supportive and incredibly patient,” Molly said. “When we first got married, nothing was going on and I was fine, so it’s definitely been an eye opener for him. But he’s extremely helpful and if I ask, he’ll do anything. He’s such a great dad and he’s doing a great job taking care of all of us.”
Molly said her boys are quite independent for their ages and very helpful. “My boys sometimes ask, ‘Can I sit on your lap, mommy? Is today a good day or a bad day?’”
Molly admits that it can be hard to be forced to sit on the sidelines when she wants to be in the middle of the action with her young family. “It’s really painful when you don’t have the choice and want to be active with them,” Molly confesses.
On the dark days, her faith helps her through. “I don’t think God wastes anything…illness, trauma, hurt. He gave this to me…but He can use it.”
Q & A
What’s your favorite activity to do with your family/kids? Playing soccer and baseball together.
What’s your go-to activity when you finally have a few minutes to yourself? Reading.
Name one thing you swore you’d never do as a mom/dad/parent, but totally do. Show my temper!
Describe your life in five words. Faith, chaos, community, love, adventure.
What’s your favorite Toledo hangout? Barnes and Noble.
Describe Toledo in a sentence. A city in revival.
Local Resources for Families
Gateway Pediatric Therapy
Toledo Clinic coming soon
248-221-2945 | gatewaypediatrictherapy.com/toledo
Gateway Pediatric Therapy is the premier center for ABA therapy and the treatment of autism spectrum disorder. Gateway offers first-class treatment from the comfort of home and with a schedule that works for you and your child. Gateway’s expert team of Board Certified Behavior Analysts and ABA technicians is solely committed to showing each client the highest level of compassion, respect, and quality of care. At Gateway, caregivers and children are more than just familiar faces — they’re family.
Green Options for Autism of Lucas County
1660 Amesbury Rd., Toledo
419-720-4350 | goal4autism.com
Green Options for Autism of Lucas County (G.O.A.L) believes all students deserve a high-quality education that supports them in developing the academic, social, and emotional skills they need to thrive. GOAL is an autism organization that serves young people and families throughout Lucas County and the surrounding region, running a school for students with autism and a day program that allows adults with autism to go out into the community and work.
This organization aims to empower participants by teaching them functional life and job skills. Highly trained instructors use technology, visual aids, and project-based learning to teach independence and communication skills.
Mercy Health Children’s Hospital
3521 Briarfield Blvd., Maumee
419-794-7259 | mercy.com
A diagnosis of autism spectrum disorder can be an overwhelming experience for parents. To meet the growing needs of our community, Mercy Health Children’s Hospital Autism Services has grown in size and scope, providing Applied Behavior Analysis (ABA), Speech Therapy, Occupational Therapy, and Mental Health Counseling for children from the age of earliest diagnosis through 6 years. ABA is a scientifically proven treatment of autism and is most effective when it is implemented intensively at an early age. Mercy offers ABA therapy in a clinic setting, which includes development of behavior and skill acquisition plans, one-on-one therapy, parent training, and small group instruction that targets critical school readiness skills.
Help Me Grow at Bright Beginnings
6393 Oak Tree Blvd.,Independence, OH
419-665-3322 | ohioearlyintervention.org
Early Intervention supports families of young children, from birth to age 3, with developmental delays and disabilities. If eligible, your service coordinator and team will work with your family to learn more about your family’s priorities and your child’s needs to develop a service plan. The team will provide support and resources to assist you in enhancing your child’s learning and development through everyday routines within your family’s home and the community. Early intervention is grounded in the philosophy that young children learn best from familiar people in comfortable settings.
YWCA Child Care Resource & Referral
1018 Jefferson Ave., Toledo
800-632-3052 | YWCAnwo.org
admintoledo2@ywcanwo.org
The YWCA Child Care Resource and Referral (CCR&R) provides services to parents and family members seeking child care services, early education, and child care professionals. YWCA provides a wide range of services for families and education professionals, including referrals for child care, information about indicators of quality, assistance with various parenting topics, PD for educators, technical assistance for child care programs, and other useful services.
Harbor Behavior Health
7140 Port Sylvania Drive, Toledo, OH 43617
419-475-4449 | harbor.org
Harbor’s Developmental & Behavioral Pediatric Team provides a comprehensive approach to the diagnosis of children (ages 0-18) with a variety of developmental and behavioral concerns. The team works with families and children to identify, develop, and implement the best treatment options considering individual concerns and goals for treatment. Harbor’s team of professionals collaborate with other specialists in the area to ensure the most effective and beneficial treatment for each individual.
The Ability Center
5605 Monroe St., Sylvania
419-885-5733 | abilitycenter.org
The Ability Center is a local nonprofit serving people with disabilities since 1920. Programming is aimed at fostering greater independence and a stronger connection to the community. The Ability Center advocates for the rights of people with disabilities, trains and places service and therapy dogs, gifts durable medical equipment, builds home modifications (ramps, stairlifts and grab bars) for greater independence, provides information and referrals, and implements interactive Life Skills classes for youths.
