Support for Parenting a Child With Disabilities

育儿is a tough yet rewarding job. And, raising a child who has disabilities can make the job even tougher. Those parents and caregivers can deal with feeling frustrated, lonely, and overwhelmed.

By offering these parents the support and encouragement they need, they can feel less alone. July is Disability Pride Month and provides an opportunity to highlight the strength and determination these parents possess and offer resources that can lend support.

Some of the Challenges

Being the caregiver of a child with disabilities has its own unique sets of challenges that other parents don’t always understand. For instance, parents may battle anxiety as they try to handle the flurry of doctor and therapy appointments for their child, along with running a household and potentially working a job outside the home.

“Raising a disabled child can feel like running a marathon where the finish line is constantly being moved further away from you. And no one is cheering for you and no one seems to get what’s so hard for you. And so, these parents wind up feeling isolated, exhausted, and overwhelmed just by day-to-day life,” statesRose Reif, MS, LCMHC, certified rehabilitation counselor, and board-certified to provide telemental health.

These parents also may battle guilt, thinking they should be doing more for their child or even blaming themselves for the situation. They may even deal with depression and anger, overwhelmed by their situation and the fact that it goes on 24 hours a day.

“Parents raising disabled kids are constantly vigilant; listening in the other room to make sure there’s no meltdown. Scanning the playground to ensure no one is approaching to say something unkind while their child is within earshot," Reif explains.

They also are always on high alert and trying to prepare for the unexpected. For instance, they may always be watching for signs of a seizure or leaving yet another social event because the babysitter texted that they need to come home.

“Parents raising kids with disabilities are constantly ‘on,’ and every other challenge they face is made exponentially harder because they can never be ‘off,’” Reif explains.

Finances also can be a major source of worry. Experts note that constant haggling with insurance companies, mounting bills, and exorbitant medical costs for critical care can devastate parents.

Relational Concerns

每个父母都希望their child to be happy. And when a parent sees their child being rejected, it hurts. That pain can be magnified for parents of disabled children, whose kids may not get birthday party invites or receive an invitation to join a study group.

Their children may struggle with doubt andself-esteem issues, putting the caregiver in the place of trying to emotionally support their child and themselves. Caring for a child with disabilities can also wreak havoc on relationships in the household.

“There is a very high risk of divorce due to extra stress; 50% of typical marriages end in divorce; the rate is much higher when a child has a disability,” notesMary Keen, MD, pediatric physiatrist at Marianjoy Rehabilitation Hospital, a part of Northwestern Medicine.

What Kind of Support is Needed?

所有的父母都需要休息的时候。need is magnified in parents of children with disabilities.

For instance, they need physical support. Parents may be physically lifting or assisting their children on a day-to-day basis. An opportunity to be free of those duties would be a welcome respite.

They also need mental and emotional support. The wear and tear of “decision fatigue” and trying to care for others with relatively no time for yourself, can leave these parents completely spent.

With their focus on their children, these parents need resources that will give them the support and assistance that they desperately need.

Resources

From Facebook groups to respite care programs, resources are available to help parents of children with disabilities. There are national programs, and there may be local options available in local communities.

Searching online, getting advice from doctors and therapists, and consulting other parents are great places to start to gather information.

Here are a few organizations that may be beneficial:

• National Resources for Parents of Children and Youth with Disabilities
• National Dissemination Center for Children with Disabilities
• Administration for Children and Families
• Easterseals
• Sibling Leadership Network
• ReelAbilities

与辅导员,找到一个支持小组,and leaning on friends and family can also help to ease the burden these parents carry.

“They can find strength in alliances with other parents and also realize they have more information—and control—than they think,” states disability specialist and researcherFran Pollock Prezant, MEd, CCC-SLP.

Prezant, one of the authors of "Married with Special Needs Children" and other books that help children with disabilities, notes that when parents receive support and encouragement, it helps the outlook for parent and child alike.

“It is important to try to find the child’s strengths and potential and build on it. Most children with disabilities can grow up to finish school, some go on to jobs and/or college programs and enter the workforce,” she notes.

How You Can Help

While you may not be a parent of a child with a disability, there are ways you can be helpful and supportive. If you see a parent out there who is struggling, you can help by holding the door for them or offering to carry items.

You can include children with disabilities when coordinating parties or scheduling playdates. They are normal children with normal feelings who want to have normal fun.

Offering to perform duties for parents who are stretched thin also can be a big help. Something as simple as bringing them a cooked meal or offering to cut the lawn can provide them a few precious moments of respite. Your selfless giving can be just the support they need.

“Gifts of time are so often appreciated; I suggest friends and family ask what would be most helpful,” Dr. Keen concludes.