the central theses
- Raising a child with a disability can feel like an overwhelming and isolating experience.
- Many organizations offer resources for parents and children.
- Even if you are not the parent of a child with a disability, there are ways you can support them.
Being a parent is hard but rewarding work. And raising a child with a disability can make the job even harder. These parents and caregivers may deal with feelings of frustration, loneliness, and overwhelm.
By providing these parents with the support and encouragement they need, they may feel less alone. July is Disability Pride Month and is an opportunity to highlight the strength and determination of these parents and provide resources that can support them.
Some of the challenges
Being a caregiver for a child with a disability has its own set of challenges that other parents don't always understand. For example, parents may struggle with anxiety as they try to cope with the barrage of doctor appointments and therapy for their children, running a household and possibly working outside the home.
“Raising a child with a disability can be like running a marathon with the finish line getting farther and farther away. And no one encourages you and no one seems to understand what is so difficult for you. And so these parents end up feeling isolated, exhausted and overwhelmed with everyday life,” she says.Rose Reif, MS, LCMHC, Certified Rehabilitation Counselor and Certified Elementary Health Board Member.
These parents may also be struggling with guilt because they feel they should be doing more for their child, or even blaming themselves for the situation. They may even be dealing with depression and anger, overwhelmed by their situation and the fact that it's happening 24/7.
Rose Reif, MS, LCMHC
Raising a child with a disability can be like running a marathon, with the finish line always moving away from you... And so, in the end, these parents feel isolated, exhausted and overwhelmed by everyday life.
— Rose Reif, MS, LCMHC
“Parents raising disabled children are constantly vigilant; Listen in the other room to make sure it doesn't break. Scan the playground to make sure no one comes and says indecent things while your child is within earshot," explains Reif.
They are also always on high alert, trying to prepare for the unexpected. For example, they are always on the lookout for signs of a seizure or leaving another social event because the nanny texted them to come home.
"Parents raising children with disabilities are constantly 'on', and every other challenge they face becomes exponentially more difficult because they can never be 'off,'" explains Reif.
Finances can also be a concern. Experts point out that constant negotiations with insurers, rising bills and the exorbitant medical costs of intensive care can take a toll on parents.
What should I say instead of "special needs"?
All parents want their children to be happy. And when a parent sees their child being rejected, it hurts. This pain can be magnified for parents of children with disabilities, whose children may not receive invitations to birthday parties or an invitation to join a study group.
Your children may struggle with doubts andself esteem problemsby the caregiver trying to provide emotional support for their child and themselves. Caring for a disabled child can also devastate relationships at home.
“Because of the added stress, there is a very high risk of divorce; 50% of typical marriages end in divorce; the rate is much higher when the child has a disability,” he says.Mary Keen, physician, a pediatric physiatrist at Marianjoy Rehabilitation Hospital, part of Northwestern Medicine.
Talk to your child about their disability
What kind of support is needed?
All parents need a break every now and then. This need is magnified for parents of children with disabilities.
For example, they need physical support. Parents can raise their children in everyday life or help them physically. A chance to get rid of those obligations would be a welcome change.
They also need mental and emotional support. The wear and tear of “decision fatigue” and trying to care for others with relatively little time for themselves can exhaust these parents.
Because they are focused on their children, these parents need resources to give them the support and help they desperately need.
From Facebook groups to outreach programs, resources are available to help parents of children with disabilities. There are national programs and local options may be available in local communities.
Searching online, getting advice from doctors and therapists, and consulting with other parents are all good places to start gathering information.
Fran Pollock Prezant, MEd, CCC-SLP
They may find strength in alliances with other parents and also realize that they have more information and control than they realize.
— Fran Pollock Prezant, MEd, CCC-SLP
Here are some organizations that may be of benefit:
- National resources for parents of children and youth with disabilities
- National Center for the Advocacy of Children with Disabilities
- administration for children and families
- easter stamps
- Sibling leadership network
- role skills
Talking to a counselor, finding a support group, and getting support from friends and family can also help ease the burden for these parents.
"They can find strength in alliances with other parents and also realize that they have more information and control than they think," says the disability specialist and researcher.Fran Pollock Prezant, MEd, CCC-SLP.
Prezant, one of the authors of "Married with children with special needs' and other books that help children with disabilities, suggests that when parents are given support and encouragement, prospects improve for both parents and children.
“It is important to try to find and develop the child's strengths and potential. Most children with disabilities can grow up and graduate from school, some get jobs and/or university programs and enter the workforce,” he says.
how can you help
Even if you are not the parent of a child with a disability, there are ways you can help and provide support. If you see a parent struggling, you can help by holding the door open or offering to carry items.
You can involve children with disabilities when coordinating parties or planning play dates. They are normal kids with normal feelings who just want to have a normal fun time.
Also offering to do housework for borderline parents can be of great help. Something as simple as bringing a cooked meal or offering to mow the lawn can provide precious moments of relaxation. Your selfless surrender may be just the support they need.
“The gifts of the times are much appreciated; I suggest that friends and family ask what would be most helpful," concludes Dr. no.
what does it mean to you
Parenting is difficult. Special circumstances or situations with children can make this even more difficult. Acknowledge the fact that all parents have challenges and be compassionate. Give them grace and notice that they are doing the best they can. Offer your help and become part of the village to help them move forward.
The difficulties of the COVID-19 pandemic for children with disabilities
LaKeisha Fleming is a prolific writer with over 20 years of experience writing for a variety of formats, from film and television scripts to magazine articles and digital content. She has written for CNN, Tyler Perry Studios, Motherly, Atlanta Parent Magazine, Fayette Woman Magazine and many others. She is passionate about parenting and family and the destigmatization of mental health issues. Her book, No Heartbeat: From Miscarriage to Depression and Hope, is authentic, transparent, and brings hope to many people. Visit her website at www.lakeishafleming.com.
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