November is National Family Caregivers Month, and for many
parents of children with autism, round-the-clock caregiving continues day after
day, month after month, and year after year––long after those children become
adults. Because society is not prepared to deal with the thousands of adults
with autism who require special care, the vast majority of these adults with
autism depend upon family members to take care of them. Those adults with autism
unable to perform daily living tasks independently, such as grooming and
preparing meals, rely upon family caregivers to meet those critical basic
needs. Although support personnel, including therapists and respite care
providers, offer assistance, the bulk of care falls upon family to assure that
the adult with autism is kept safe, happy, and content.
The Caregiver Action Network provides a helpful guide online, “10 Tips for Family Caregivers,” that may assist parents caring for their children with autism. [To read this article, please click here.] These excellent suggestions are summarized as follows:
1. Seek support from other caregivers.
The Caregiver Action Network provides a helpful guide online, “10 Tips for Family Caregivers,” that may assist parents caring for their children with autism. [To read this article, please click here.] These excellent suggestions are summarized as follows:
1. Seek support from other caregivers.
2. Take care of
your own health
3. Accept
offers of help and suggest specific things people can do to help you.
4. Learn how to
communicate effectively with doctors.
5. Take respite
breaks.
6. Watch out
for signs of depression and don’t delay getting professional help.
7. Be open to
new technologies that can help you care for your loved one.
8. Organize
medical information so that it’s up-to-date and easy to find.
9. Make sure legal documents are in order.
10. Give yourself credit for doing the best you can in one
of the toughest jobs there is!
Two of these tips deal with organization, specifically organizing medical information and legal documents, and I have found this to be very important. I have a portable file box organized with important documents dealing with insurance, medical information, Social Security, and other paperwork for Alex we may need. When we were recently successfully pleading our case to keep him on our family health insurance policy, finding necessary documentation was simple because I had all of this information easily accessible in the file box.
In addition, I have organized two portfolio folders of information: one for his services, such as behavioral and music therapy and respite care, and one for medical information. These folders are very helpful during quarterly meetings with his support staff and whenever we take him for medical tests or doctor appointments. In the medical folder, I keep updated lists of his medications and supplements, as well as a list of all of his health care providers and their addresses and phone and fax numbers, which comes in quite handy. Also, I keep a copy of his legal paperwork naming us as Alex’s legal health care representatives, which has proven extremely valuable over the past few years so that we have legal power to make decisions regarding Alex’s health care and to discuss medical issues with his doctors now that Alex is an adult. Of course, the tip about communicating effectively with doctors is also critical because we must advocate for our children so that they get the best health care possible. Often, this requires medical research ahead of time so that we know as much as possible about our children’s condition. Furthermore, many doctors do not know much about autism, and as parents, we may need to teach them things they never learned in medical school to ensure our children receive proper medical care.
Along with organization, seeking help is another common theme in this list of useful suggestions. Finding others who are in similar situations is valuable, not only because they can provide empathy, but also because they often can offer excellent suggestions and recommendations. When Alex was younger, I belonged to two online parent support groups where I learned a great deal about autism and developed friendships with autism moms that have lasted through the years. Currently, I belong to three Facebook groups for parents of special needs children who live near me, and we often share ideas, recommendations of professionals, and tips to help each other care for our kids.
While accepting offers of help is a great idea, it’s one that I am personally not good at doing. Never wanting to bother other people and being too proud to ask for help, I try to be as independent as I can. However, I am thankful that my husband and mother are incredibly supportive and willing to step in if needed. Recommending that caregivers suggest specific things others can do to help is a terrific tip because people often want to help but don’t know what to do. While parents may not feel comfortable having others watch their children with autism, friends and family could help by running errands, picking up groceries, or even simply praying for them. If good respite care is available, parents can use this resource to give themselves a break from caregiving and to allow their children to engage with a caregiver other than their parents.
Another aspect of help is new technology. One of the most valuable newer devices is the iPad, which offers many apps useful to people with autism. Some of these allow nonverbal children and adults with autism to communicate easily for the first time, which is valuable for them and their caregivers. Getting Alex an iPad Mini for Christmas a few years ago was one of the best gifts we ever gave him. He frequently listens to music on it, which relaxes him, and he satisfies his curiosity by looking up dozens of questions every day. Moreover, he can entertain himself by watching videos he enjoys and by playing games.
Finally, another theme found in these tips is caregiver self-care. We need to take care of our children’s parents so that we can be physically, mentally, and emotionally at our best to take care of them. Knowing that I may need to care for Alex for a long time, I have been making changes to ensure I’m as healthy as I can be. Certainly, caregiving is quite stressful, and at times, I have needed to deal with my own anxiety so that I don’t increase Alex’s anxiety. By eating healthier, taking vitamins, getting as much sleep as possible, making time to do things I enjoy, and finding emotional strength through my faith in God, I am better equipped to take care of Alex. Although I admit that I have trouble following the last tip about giving myself proper credit because I am my own worst critic, I am blessed that Ed and my mom constantly encourage me with praise for my efforts. When I doubt how I’m handling a situation regarding Alex’s care, they reassure me that I’m doing the right thing. Perhaps one day I will see myself as competent as they assure me I am.
Caregiving for a family member requires energy, devotion, and unconditional love; however, organization, help from others, and self-care can make this crucial task easier. While other people may not realize how much we do in caring for our loved ones on a daily basis, we know that we are serving God as we love and care for those He has entrusted to us.
“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly––not for what you will get out of it, but because you are eager to serve God.” 1 Peter 5:2
Two of these tips deal with organization, specifically organizing medical information and legal documents, and I have found this to be very important. I have a portable file box organized with important documents dealing with insurance, medical information, Social Security, and other paperwork for Alex we may need. When we were recently successfully pleading our case to keep him on our family health insurance policy, finding necessary documentation was simple because I had all of this information easily accessible in the file box.
In addition, I have organized two portfolio folders of information: one for his services, such as behavioral and music therapy and respite care, and one for medical information. These folders are very helpful during quarterly meetings with his support staff and whenever we take him for medical tests or doctor appointments. In the medical folder, I keep updated lists of his medications and supplements, as well as a list of all of his health care providers and their addresses and phone and fax numbers, which comes in quite handy. Also, I keep a copy of his legal paperwork naming us as Alex’s legal health care representatives, which has proven extremely valuable over the past few years so that we have legal power to make decisions regarding Alex’s health care and to discuss medical issues with his doctors now that Alex is an adult. Of course, the tip about communicating effectively with doctors is also critical because we must advocate for our children so that they get the best health care possible. Often, this requires medical research ahead of time so that we know as much as possible about our children’s condition. Furthermore, many doctors do not know much about autism, and as parents, we may need to teach them things they never learned in medical school to ensure our children receive proper medical care.
Along with organization, seeking help is another common theme in this list of useful suggestions. Finding others who are in similar situations is valuable, not only because they can provide empathy, but also because they often can offer excellent suggestions and recommendations. When Alex was younger, I belonged to two online parent support groups where I learned a great deal about autism and developed friendships with autism moms that have lasted through the years. Currently, I belong to three Facebook groups for parents of special needs children who live near me, and we often share ideas, recommendations of professionals, and tips to help each other care for our kids.
While accepting offers of help is a great idea, it’s one that I am personally not good at doing. Never wanting to bother other people and being too proud to ask for help, I try to be as independent as I can. However, I am thankful that my husband and mother are incredibly supportive and willing to step in if needed. Recommending that caregivers suggest specific things others can do to help is a terrific tip because people often want to help but don’t know what to do. While parents may not feel comfortable having others watch their children with autism, friends and family could help by running errands, picking up groceries, or even simply praying for them. If good respite care is available, parents can use this resource to give themselves a break from caregiving and to allow their children to engage with a caregiver other than their parents.
Another aspect of help is new technology. One of the most valuable newer devices is the iPad, which offers many apps useful to people with autism. Some of these allow nonverbal children and adults with autism to communicate easily for the first time, which is valuable for them and their caregivers. Getting Alex an iPad Mini for Christmas a few years ago was one of the best gifts we ever gave him. He frequently listens to music on it, which relaxes him, and he satisfies his curiosity by looking up dozens of questions every day. Moreover, he can entertain himself by watching videos he enjoys and by playing games.
Finally, another theme found in these tips is caregiver self-care. We need to take care of our children’s parents so that we can be physically, mentally, and emotionally at our best to take care of them. Knowing that I may need to care for Alex for a long time, I have been making changes to ensure I’m as healthy as I can be. Certainly, caregiving is quite stressful, and at times, I have needed to deal with my own anxiety so that I don’t increase Alex’s anxiety. By eating healthier, taking vitamins, getting as much sleep as possible, making time to do things I enjoy, and finding emotional strength through my faith in God, I am better equipped to take care of Alex. Although I admit that I have trouble following the last tip about giving myself proper credit because I am my own worst critic, I am blessed that Ed and my mom constantly encourage me with praise for my efforts. When I doubt how I’m handling a situation regarding Alex’s care, they reassure me that I’m doing the right thing. Perhaps one day I will see myself as competent as they assure me I am.
Caregiving for a family member requires energy, devotion, and unconditional love; however, organization, help from others, and self-care can make this crucial task easier. While other people may not realize how much we do in caring for our loved ones on a daily basis, we know that we are serving God as we love and care for those He has entrusted to us.
“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly––not for what you will get out of it, but because you are eager to serve God.” 1 Peter 5:2
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