When a child is born with a disability, the entire family unit is affected. The parents are suddenly responsible for meeting the needs of their child that they may not have been prepared for, and siblings can feel left out or overwhelmed. It can be difficult to know how to best support parents and caregivers of adult children with disabilities, but there are many ways you can help.
By understanding what they are going through and providing practical and emotional support, you can make a big difference in their lives.
Your friends and family with adult children who have intellectual disabilities have many of the same worries and joys as other parents, but in addition, they often carry a very heavy burden that most people can't imagine.
In some cases, their child will never be fully independent and will need care for his whole life.
Your loved ones may feel isolated and overwhelmed by their responsibilities, or even guilty if they want to take a break from their full-time job as caregivers.
You can help them through this stressful time by offering practical support.
Reasons Why Supporting Parents and Caregivers of Adult Children with Disabilities is Important
All too often, we focus on the child when a family is facing a disability. At the same time, we assume that parents and caregivers are strong, competent individuals who can handle any situation with which they are presented.
While this may be true in many cases, it's important to remember that parents and caregivers also need support in order to maintain their own health and well-being.
With this in mind, here are three reasons you should consider supporting the parents and caregivers of adult children with disabilities:
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They're at risk for depression.
Caring for an individual with a disability is physically and emotionally demanding. As a result, many parents and caregivers become depressed while carrying out their daily responsibilities.
In fact, one study found that nearly half of all mothers of children with disabilities met the criteria for clinical depression (compared to just over 20 percent of mothers who had children without disabilities).
They need help advocating for their child.
In addition to taking care of their child on a day-to-day basis, parents and caregivers also have to advocate for their child's rights.
This includes helping them obtain appropriate health care and educational services that are needed later in life.
If parents and caregivers don't have time or resources to advocate for these things
Here are 5 simple ways you can do that:
1. Don’t assume anything
One of the best ways to support parents and caregivers of adult children with disabilities is to give them what they need.
But the only way you can do that is to ask the right questions in the first place, which means you need to avoid making assumptions.
For example, don’t assume they want their adult child with a disability to live with them forever, or that they don’t want them to move out.
Similarly, don’t assume that because a person has a disability they can’t work or go to school or make friends like anyone else.
Don’t assume they can’t drive. Don’t assume they can drive. Don’t assume they want special treatment – many times people with disabilities are sick of being singled out and just want to be treated like everyone else.
If you really want to know what their needs are, tell them so and then ask them directly about those needs.
If you spend time with a parent or caregiver of an adult child with a disability often, don’t wait for them to bring up issues if you know there are problems – tell them you care about what is going on for them and ask how you can help.
2. Listen with empathy
Who do you turn to when you need advice or just a good listen?
Many people have close friends they can count on, but some parents of adult children with disabilities don’t have this kind of support.
One study found that parents “frequently felt isolated.”
Their adult children might be living at home still, or they might be living in group homes.
Either way, being a parent can be lonely.
Fortunately, there are many ways we can support the parents and caregivers of adult children with disabilities.
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Today we’ll look at three of the best ones: listen with empathy, talk about the positives and help them receive support from others.
Do you know someone who could use extra support? You could start by asking how they’re doing.
Or if you already have a relationship with them, try listening to them deeply and validating their feelings and experiences.
Listening empathetically shows someone that you care and makes it easier for them to open up about their challenges and joys.
This can also make them feel less alone in their experience because they know someone else understands what they’re going through.
3. Be a resource
One of the ways to support parents of adult children with disabilities is to be a resource for them.
A lot of parents may have trouble navigating the different places their child will need to go, such as applying for disability or finding a place to live.
This can be very overwhelming, especially if trying to figure it out alone.
As a friend or family member, you can help them find the resources they need or even help them apply for things on their own.
You can also help by connecting them to other organizations that can provide even more help and information about programs available for their child.
This can really ease some of the stress off parents who are just trying their best to help their children have a happy life.
4. Be patient
The first thing to realize is that adults with disabilities and their caregivers have a lot going on.
The adults with disabilities are tasked with the daily struggle of fighting against a society that is often not set up to accommodate them, and their parents typically spend much of their time worrying about them and making sure they're okay.
Parents and caregivers need all the help and love they can get in order to be there for their adult children.
You can help give that love by being understanding of the parents or caregivers you know who seem distracted, overwhelmed, or otherwise busy.
They might spend hours on the phone dealing with a service provider who's not cooperating, or they might spend an entire day trying to fix an issue with someone's medication.
If a parent or caregiver asks you for something, offer your assistance quickly and without hesitation.
If they're having a bad day, don't take it personally—just ask if there's anything you can do to help make their lives easier today.
If you really want to make a difference in their lives, offer yourself as a sounding board or just talk to them about what it's like being in your shoes for a little bit.
Parents and caregivers of adults with disabilities often feel like no one understands their situation, so offering yourself an ear
5. Be available
One of the Ways to Support parents and caregivers of adult children with disabilities is to be available.
It can be helpful to know that there is someone who is willing to listen when parents need to talk about their concerns, frustrations, needs, or goals.
This might include someone who has had a similar experience, who has training in disability services, or simply someone who is willing to listen and help.
The caregiver's perspective can sometimes be lost in the system or among other family members.
Support systems can also help by encouraging parents and caregivers to take care of themselves.
Many parents struggle with guilt for having these feelings at all, so it can be helpful for them to know that it does not mean they are bad people or bad parents.
For some, seeking professional help may help them gain perspective and learn ways to cope more effectively.
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It's time to break the stigma surrounding disabilities and the limitations that come with them. For those families who have someone special who requires their care, know that the responsibilities that come with having an adult child with a disability can be heavy to bear.
However, these challenges are not beyond your ability to handle them.
There are things you can do to help support the parents and caregivers of adults with disabilities.
Knowledge of caregiving is power; use yours wisely.
Supporting parents and caregivers of adult children with disabilities can be challenging, but it is also incredibly rewarding.
By providing practical help and emotional support, you can make a real difference in their lives.
Thank you for taking the time to read this article, and please consider sharing it with your friends and family who might find it helpful.