This whole adventure known as parenthood is wonderful, exhausting and often quite difficult. When you add additional challenges like behavioral problems, physical disabilities or medical conditions, it can be even harder. If you’re a parent of a child with special needs, know you’re not alone. Here in Northwest Ohio there are abundant resources available to help you, your child and your family make the most of every day.
Caring for the Caregiver
How to support parents of special needs children
By Christa Melnyk Hines
When Tracy Glock’s 13-month-old daughter, Kira, was hospitalized with Acute Myeloid Leukemia, she was touched by the outpouring of support she and her husband received.
During those difficult months, the community rallied around the family. Friends and acquaintances babysat Kira in the hospital while her mom and dad worked, and many others helped by delivering meals and even mowing the family’s lawn. “Words cannot express the gratitude you feel when someone you barely know does so much for you,” Glock says. Tracy was also pregnant at the time with Kira’s sister, Allina.
Although Kira, now seven, has recovered from the frightening ordeal, she still faces many daily challenges. As a child with Down Syndrome and autism, learning and development takes longer and requires more patience compared to the typical child. Like many parents who have children with special needs, Glock says finding time for herself is difficult. While many of us know how to help a family in crisis, how do we support parents who often put their own needs last as they focus on the daily challenges of caring for special needs youngsters?
Offer to babysit
Finding trustworthy, alternate caregivers and qualified babysitters is a huge relief for the busy parents of special needs children. “Every special needs parent is different, but everyone can use a little rest,” Glock says.
Because special needs children require more attention, other children in the family may feel slighted. “Children always struggle and this is the case whether they’re special needs or not,” says Nancy Masannat, mom to two children, Emy, 16, and 14 year old Kyle, who is on the autism spectrum. “There are going to be sibling jealousies.”
When her children were younger, Masannat would often schedule her son’s appointments during times when her daughter was in preschool. “In my daughter’s mind, it wasn’t fair that someone was coming to the house and playing with her brother and not her.”
Other ideas to brighten a friend’s day:
- Purchase a gift certificate for a massage or manicure
- If you plan to have the family over, ask your friend if you
should be aware of any food sensitivities or specific ground
rules to ensure a successful visit - Help with getting kids to practices/appointments
- Deliver a meal
- Mow their lawn
- Send a bouquet of cheerful flowers
- Arrange for a house cleaning crew
- Ask if you can pick up anything while running errands
- Mail an encouraging card
Listen
Ask your friend how they’re doing and then simply listen. Avoid offering platitudes or suggestions to help fix problems. “We all just like to be heard. Everybody likes to vent,” Masannat says. “Just listen to what the issues are without judgment. That’s a huge help for everybody, but primarily when you’re dealing with something that someone else might not understand.”
Educate yourself
Learn about your friend’s child and how their disability affects him or her, and ask your friend about their specific parenting challenges. “It shows that you care and will help you provide more effective support,” says Heather Trammell, mom to two special needs children, Beth, 14, who has Down syndrome and Marie, 11, who has high-functioning autism. Both girls also have a connective tissue disorder called Ehlers-Danlos syndrome.
Suggest resources
Support groups help parents feel less alone and provide valuable resources for assistance in childcare, school issues and navigating healthcare. “The biggest thing for me was to know that I wasn’t in this by myself— that I wasn’t the only person who had a child who didn’t sleep well— that I wasn’t the only one with a child who was now three and not talking,” Masannat says.
Special Needs Parent Support Receives Non-Profit Status
From its creation almost 10 years ago, Special Needs Parent Support has been offering resources for special needs families in our community. Parents of a special-needs child, John and Antonia Faisant understand the unique demands on special-needs families and have been the main source of funding for the group which provides meals and respite, giveaways, retreats and more. They believe if the parent is supported, that benefits their children. They have shown that they truly care about the people they serve, letting every parent know that they matter and that they are not alone.
Becoming a non-profit
Special Needs Parent Support has been an invaluable resource not only in supporting special needs families but also in connecting them to each other. Recently, Special Needs Parent Support was granted tax-exempt 501c (3) status. As a faith-based non-profit, they will continue to offer all of the support they have in the past, but with the help of donations from the community they will be able to expand their ministry and support more families.
“Even though we’ve been doing this for a while, we’re just starting out as a non-profit; it’s a learning process, but we trust God will give us the wisdom we need. He wants to meet the needs of these families, and we want to be used by Him to make it happen.”
How you can help
One parent noted after returning from a retreat funded by Special Needs Parent Support, “I never felt love like I felt at the family retreat.” Antonia shared that’s why they’ve continued to do what they’ve done. They continue to see an impact and believe all special needs families should feel loved and cared for.
The agency needs your support to pursue its mission. To find out how you can make a donation or for more information about Special Needs Parent Support contact Antonia Faisant at Faisant@gmail.com or 419-306-7428 and visit “Special Needs Parent Support” on Facebook.
Special Needs Events
Inclusive Game Night
The tween or teen years can be challenging enough but those with special needs often face other challenges including feeling excluded from many social activities. Two parents with special needs teens in conjunction with Friends of Blanchard Valley School put together an inclusive monthly game night. Teens and tweens of all abilities are welcome. Game Night was first introduced in September and is held the fourth Friday of each month through May from 6-8pm at the Blanchard Valley School Cafeteria, 1700 E. Sandusky St. All children must be accompanied by an adult. Pizza is provided but side dishes are welcomed and appreciated. For more information and to RSVP visit “Friends of BVS” on Facebook, where you will also find additional events, helpful information, and groups for parents.
Grant for Children’s Museum of Findlay’s All Abilities Nights Provides Free Admission
Thanks to a grant provided by the Hancock-Wood Electric Community Trust Fund, admission is free for families to attend the 2018-2019 school year All Abilities Nights.
The Children’s Museum of Findlay and Friends of Blanchard Valley School have partnered to offer an evening of interactive, hands-on play for children with special needs at the Children’s Museum of Findlay. These events, during times when the museum is typically closed to the public, will be sensory friendly. The mission of the All Abilities program is to connect families of special needs children!
All Abilities Nights are held Wednesdays from 4:30-6pm. Upcoming nights include: November 14, December 12, January 9, March 13, April 10, and May 8.
Be sure to visit cmfindlay.com for the Children’s Museum of Findlay’s Social Story and to learn more about their Sensory Room! The museum is located in the Findlay Village Mall, 1800 Tiffin Ave., Suite 201.
Local Resources for Special Needs Children and Families
Blanchard Valley Center
1700 E. Sandusky St. | 419-422-6387 | blanchardvalley.org
Blanchard Valley Center’s mission is to empower people with developmental disabilities, enhancing lives with meaning and purpose. BVC offers a wide range of programs that support persons of all ages with developmental disabilities, including recreation, self-advocacy, provider support and health education.
Resources begin with Early Intervention serving infants, toddlers, and their families in the home. BVC serves students from preschool through high school and provides assistance for families with youth preparing to transition from school to the workforce. BVC also provides case management to develop personalized plans that connect families with community resources, employment, and care providers.
Awakening Minds Art
317 S. Main St. | 419-302-3892 | awakeningmindsart.org
Awakening Minds Art is a non-profit organization that offers a variety of programs for all ages and abilities. THE MISSION of Awakening Minds Art is to provide therapeutic, educational and developmental programs to all ages and abilities. THE VISION is to create affirming, all-inclusive spaces where people of all ages and abilities have the confidence to develop into the best version of themselves. Awakening Minds works towards building skills that help people not only feel success within our community, but to be successful throughout their lives.
Their therapeutic programs are geared for special needs of all ages and focus on practicing and achieving their non-art related goals (IEP goals, fine motor, gross motor, storytelling etc.). The staff at AMA works with students, giving them the guidance and attention they need. Staff members also work with families and local schools throughout Northwestern Ohio to achieve therapy and IEP goals. The Findlay headquarters also houses a Sensory Tools Store where families can purchase commonly used sensory tools and learn about their proper use.
Challenged Champions
11913 Rd. 6, Ottawa | 419-456-3449 challengedchampions.com
Challenged Champions Equestrian Center was established in 1997 as a non-profit charitable corporation to support individuals with special needs from early childhood through adulthood.
Using the horse and its environment, they provide equine assisted activities for people with a variety of special needs.
The movement of the horse relaxes and stimulate unused muscles, which helps build muscle tone and improve coordination and balance.They are a Premier Accredited Center with PATH (Professional Association of Therapeutic Horsemanship) Intl. and their staff of instructors are PATH certified to ensure the delivery of safe and effective services.
Challenged Champions is home to 18 horses and ponies that serve over 350 participants each year. Their program also hosts grief counseling camps, Boy Scout and Girl Scouts, county and city school programs, assisted living groups, at-risk youth, veterans and more!
The Center for Autism & Dyslexia
7430 Timberstone Dr., Ste. J | 567-525-4487
centerforautismanddyslexia.com
At The Center for Autism & Dyslexia, they believe that education isn’t about memorizing facts or taking tests—it’s about teaching children skills they can use to maximize their potential and live more meaningful lives. They are dedicated to providing a quality, well-rounded educational experience that gives children the opportunity to achieve beyond expectations. Their goal is to help shape all students into independent, productive young adults who can effectively interact in real-world settings. Their child-centered approach focuses on fostering emotional growth; increasing academic, language and behavioral competencies; and enhancing each child’s natural strengths.
At The Center for Autism & Dyslexia they don’t believe in a “one size fits all” approach. Comprehensive individualized programs for each student are the cornerstone of their education program. Using tutorial-based methods to reduce distractions, their intimate, personalized classroom model establishes trust between the teacher and the student. Even the smallest academic achievements become powerful reinforcements of a positive cycle of success.
Special Need Families
The Dunlap Family
Parents: Aaron and Janelle Dunlap
Children: Greyson (5), Hudson (2), and Emmree (9 months)
Special Needs Considerations: Emmree was diagnosed at birth with brain hemorrhage, seizures, and hydrocephalus, which results in gross motor delay, large motor delay, hypotonia, seizures, and torticollis.
When did you realize Emmree has special needs?
Immediately after birth we discovered, with the help of a neonatologist, that Emmree was struggling maintaining his body temperature and his oxygen. A team from Nationwide Children’s Hospital transported him to the NICU where a team of doctors waited to do testing that wasn’t available at the local hospital. After a sedated MRI, ultrasound and EEG, they found he was having seizures because of a large hemorrhage. This hemorrhage was large enough that it had displaced the cerebellum and other parts of his brain. He also had an excesses amount of fluid in his ventricles that caused even more pressure inside of his skull. Emmree’s seizures had stopped and he was able to maintain oxygen on his own so surgical intervention was avoided. The neurosurgeons and neurologists warned us at 4 weeks that Emmree may not smile, make eye contact, make baby sounds, etc. because of the damage that was done. But at 9 months Emmree is crawling, walking along furniture, laughing, talking and always smiling. AND he took a trip halfway across the world to China in May at just 4 months old!
Where was the first place you went for more information?
Special Needs Parent Support in Findlay. The personal connection and experience with doctors, tests, medication and everyday struggles was incredibly helpful and encouraging.
What are some ways that Emmree needs extra help?
Right now we take one step at a time with Emmree. We don’t know what physical and mental consequences will result from this trauma. So far he went through a few months of physical therapy to strengthen his body and help him with developmental milestones like sitting up and crawling. We have been able to take a break from physical therapy and are just letting him grow and develop. At home we do a lot of sensory input and stimulation exercises.
What local organizations have been supportive?
Special Needs Parent Support.
How do you cope when things get difficult?
Our family’s faith in Jesus Christ has carried us through Emmree’s difficult start to present. Our church family has continually lifted us in prayer and come right alongside us as we travel in Emmree’s journey. When it is difficult, we just love to be together as a family. Even if it may not be convenient for little ones at doctor appointments or traveling, it is so sweet and refreshing to be together, supporting and encouraging one another.
Advice for other families with a special needs child?
I would advise any parent/family with a special needs child to have faith…be strong and courageous. As Joshua 1:9 reveals, you are never alone.
The Endicott-Hill Family
Parents: Rachel Endicott and Tory Hill
Children: Cayden (12), Raylieana (7), Braxton (2)
Special Needs Considerations: Braxton was diagnosed with a UBA5 Variant which is a very rare genetic condition that was passed by both his parents. UBA5 is a severe degenerative neurological condition with only 20 confirmed cases in the world. The UBA5 gene mutation has led to a severe drug-resistant epilepsy which started as infantile spasms and has now progressed to Lennox-Gastaut syndrome. Braxton continues to have hundreds of seizures daily with profound intellectual disability, cerebral palsy, cortical visual impairment, among other diagnoses. However, his diagnoses do not define this loving, happy little boy. Braxton loves music and cuddling, and he will smile at the sounds of his loving family’s voices.
When did you realize that Braxton has special needs?
Immediately after birth Braxton spent his first few months of his life in the NICU. Around 2 months old, Braxton was failing to meet developmental milestones, had an inability to gain weight and required a permanent feeding tube. The development of daily seizures soon became a primary focus. As all treatments failed, it became evident that medical intervention could not stop the seizures. High-end genetic testing was performed, and led to Braxton’s diagnosis. At 8 months old, genetic testing was confirmed that we (his parents) were genetic carriers.
Where was the first place you went for more information?
Braxton was first seen at Nationwide Children’s Hospital in Columbus. In the course of his two years he has spent over 200 days admitted in the children’s hospital. Braxton has participated in clinical research which helped a newly founded drug pass FDA testing.
What are some ways that Braxton needs extra help?
Braxton currently requires 24-hour care. Although Braxton is enrolled in intense therapy and the family strives to provide him with resources to develop new skills, Braxton will always be dependent on a parent or caregiver to provide all care.
What local organizations have been supportive?
Braxton works closely with his therapists through Help Me Grow. His therapists and case worker have been more than helpful in not only providing early therapy, but also with providing resources and referrals for special needs equipment for the home. Help Me Grow has been a great resource during this special needs journey.
How do you cope when things get difficult?
Our special needs journey has dramatically impacted our family’s faith in God and our commitment to find peace and strength through the Lord. When our journey becomes increasingly difficult, we rely on prayer and support from family and friends.
Advice for other families with a special needs child?
I believe parents often become consumed in their child’s diagnosis, but I believe that it is critical to always remind yourself that a diagnosis will not define the love you have for your child or the love your family will experience. Your life will soon consist of tiny little miracles that happen every single day. When thoughts of the future become weary and it seems like almost all hope is gone, I remind myself to always allow my faith to be greater than my fear.
Seem Family
Parent: Crystal Seem
Child: Kate (14)
Special Needs Considerations: Kate has Autism and ADHD.
When did you realize that Katie has special needs?
She was missing developmental milestones.
Where was the first place you went for more information?
Special Needs Parent Support. (I went to other places first but that is the first one that was really helpful.)
What are some ways that Katie needs extra help?
She needs routine and reminders. She needs cues to help her calm down as well as to acknowledge appropriate social boundaries.
What local organizations have been supportive?
Special Needs Parent Support and Friends of BVS. Kate is also involved with Awakening Minds Art, Special Olympics and Gliding Stars.
How do you cope when things get difficult?
We give ourselves a lot of grace. We cuddle and talk after a rough day. Chocolate helps, too.
Advice for other families with a special needs child?
Don’t ever give up. Remind yourself that you and your child are doing the best you can and believe in your child.
