Caring for the Caretaker
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 eight 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, who 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 typically developing 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 caretakers is a huge relief for parents who regularly juggle doctor’s appointments, school issues and therapy, not to mention jobs and other children.
“Every special needs parent’s needs are different, but most just love a little rest,” Glock says.
Because special needs children require more attention from their parents, healthcare providers and therapists, other youngsters 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, including Emy, 16, and Kyle, 14, who is on the autism spectrum. “There’s 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 t
hat someone was coming to the house and playing with her brother and not her.”
Having access to a qualified babysitter you can trust with your special needs child, can give you an opportunity to spend much-needed, one-on-one time with your other children too.
Ask your friend how she’s doing and then simply listen. Avoid offering platitudes or suggestions to help her 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.”
Get to know your friend’s child, including her disability, her personality quirks and her individual needs. And ask your friend about her 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, including 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.
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.
Looking for a local support group? Check out the sidebar for great resources. You can find other support groups by consulting with the therapists and teachers your child already works with, your library, your church, or online. Also check out Facebook and MeetUp.com for local support groups.
Autism Learning Partners
(855) 295-3276 • autismlearningpartners.com
For over 30 years, Autism Learning Partners (ALP) has served as a national leader in the field of developmental disabilities, serving as a full service provider specializing in the treatment of Autism and other developmental disabilities. Services are provided in the home, in the school and in the community in several states in the US. In particular, services are provided throughout Central Valley California including Sacramento and surrounding counties. ALP serves over 3000 clients yearly. We accept most major insurance plans and Medi-Cal.
California Autism Center & Learning Group
(559) 475-7860 • calautismcenter.org
The California Autism Center provides high-quality services designed to positively change social and cognitive skills in children affected by autism spectrum disorder. The organization currently serves 80+ families in the central valley with one-on-one ABA therapy in lively center-based environments. With two locations in Fresno and one in Merced, the CAC offers early intensive intervention along with individualized after-school treatment for youth up to age 18. Social Skills programs take place every Saturday, which focus on peer interaction skills while increasing confidence and independence. Free parent trainings and special events such as Autism Eats brunches are offered throughout the year.
California Special Needs Advocacy
(559) 999-9937 • caspecialneedsadvocacy.com
California Special Needs Advocacy empowers and educates families to strengthen their own advocacy skills. CSNA accompanies families and provides advice and assistance, helps interpret assessments and reports and explains their significance to the child’s educational needs, reviews all special education documents, including files, assessments, report cards, and observation reports, reviews documents, helps make sure your school district is providing the services and support to which your child is entitled by law, draft letters, responses, complaints and written requests to school and district officials, and more!
Central California Adaptive Sports Center
(559) 593-2504 • centralcaladaptive.org
Founded in 2013, the Central California Adaptive Sports Center (CCASC) at China Peak was established to enhance the quality of life of persons with disabilities by providing outdoor adventure activities in the mountains. Activities include stand-up skiing, sit-skiing, snow shoeing, mountain biking, mountain climbing, kayaking, paddle boarding, fishing, horseback riding, and camping. We invite the participation of family and friends, empower our participants in their daily lives, and have a positive enduring effect on confidence, health, independence, and overall well-being. The objective of CCASC is to provide excellent year-round adaptive recreation and adventure programming. Our programs incorporate the latest therapeutic recreation practices, facilitate activities in a professional manner, and collaborate with other organizations, with the goal of providing programming that has a lasting impact on the quality of our participant’s lives.
Central Valley Children’s Services Network
(559) 456-1100 • cvcsn.org
(CSN) is the premier source for child care resource and referral services in Fresno County. For over 40 years, CSN has provided support services for parents; child care providers and children that help meet our mission “Improving the quality of care for all children of the Central Valley.” CSN understands that quality child care goes beyond meeting the licensing requirements; it enhances the social, emotional, intellectual, physical, linguistics, and creative development of a child. We want parents with child care needs to be informed about what quality child care is and we’re here to help!
Down Syndrome Association of Central California
(559) 228-0411 • dsacc.org
Our mission is to enhance the quality of life for all people whose lives are touched by Down syndrome through education, support and social connections.
EPU Children’s Center
(559) 229-2000 • epuchildren.org
When families have a child born with a disability, born prematurely, face chronic illnesses or are struggling with family distress they come to EPU Children’s Center to receive the highest quality services, education and compassionate support. Started in 1976 by a small group of parents, it has grown to a staff of more than 100 and has developed a wide range of programs and services in response to the expressed needs of the families in our community.
UCP Central California Children’s Program
(559) 584-1551 • ucpcc.org
UCPCC provides comprehensive, effective care to children with special needs, a highly specialized, labor intensive endeavor. We work with the family and community surrounding the child in a multi-disciplinary, holistic, empowering, and supportive way. This approach is the most effective method in making meaningful changes for the child and in the long-term health and self-advocacy for the family.
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