Helping Hands and Fleet Feet

 

A few weeks ago, hurrying down the basement stairs, I somehow missed the last step and stumbled. The outside of my sock-clad foot hit the last stair, and as I lurched forward, my toes jammed into the basement floor. By the grace of God, I somehow managed not to break any bones, but I did bruise my left foot badly. Despite putting ice on my foot the rest of the day, it remained swollen and painful. That evening, I literally crawled across the floors and up the stairs to bed, too sore to walk and too proud to accept Ed’s help.

Over the next several days, my foot turned a rainbow of colors––blue, purple, green, and yellow––but it improved every day, thanks to rest, Icy Hot cream, Epsom salts soaks (no wonder Alex loves baths in Epsom salts!), and Arnica gel, a newly discovered natural wonder for bruises. While I couldn’t walk as fast on my injured foot, I managed to keep up with my usual routines of taking care of Alex’s needs. Thankful that I wasn’t hurt worse, I realized how much I took for granted the act of walking. Moreover, this incident reminded me that I must always be in good shape so that I can tend to Alex.

Last week, a close friend of mine who is also caring for a family member was explaining all the things she has to do for him daily to a group of friends. She remarked that when people’s hands don’t work properly, they need to rely upon others to do many things for them every day. As she listed the various tasks she must do as part of her routine caregiving, I nodded my head empathetically. Because of Alex’s poor fine motor skills and medication-induced hand tremors, he relies upon us for help with many activities most people take for granted, as I did with walking until my recent fall.

One of our friends sympathetically listened and then began asking me what kinds of things I needed to do for Alex. To give her one area of examples, I explained that he needs help with basic grooming tasks: cutting his nails, combing his hair, brushing his teeth, and shaving. Showing genuine interest, she asked me if I used an electric razor on him and seemed surprised when I told her that I use a regular razor to shave his face. As I explained to her, I have been doing this for several years and am fortunate that Alex is cooperative when I’m grooming him, so he does fine with a regular razor and shaving cream. In fact, I think Alex’s favorite part of the routine is when we sing the novelty song, “Shaving Cream” as I deftly move the razor across his face and neck.

Yesterday, I was reminding Alex of the importance of thanking people when they do something to help him. When he asked me for examples, I told him that his dad and I do about a hundred things every day to help him. He asked, “Or ninety-six exactly?” I assured him that I could probably come up with at least ninety-six and maybe more than one hundred. While all parents, especially those with young children, do dozens of tasks to help their children, I doubt that most people realize how many things parents of special needs children continue to do for their sons and daughters well into their adult years.

One task requiring our assistance is helping him apply lip balm multiple times a day. Alex lacks the dexterity to remove the lid from the lip balm and to apply the moisturizer to his own lips. This winter, he has become quite a connoisseur of lip balm, owning a collection of various brands and flavors. He has berry, lemon, orange, coconut, spearmint, and peppermint flavored lip balms that he asks to apply numerous times throughout every day. However, his current personal favorite seems to be vanilla, which is also my favorite. One day, he informed me after getting close enough to catch a whiff of vanilla lip balm on my lips, “You smell like [marshmallow] Peeps!” I wasn’t sure whether this was a compliment or not until I caught him eyeing my tube of lip balm. When I explained that we don’t share lip balm with other people and asked him if he knew why, assuming he understood the germ factor, he nodded and replied, “Yes, it’s in the Ten Commandments.” Well, it’s not in the Ten Commandments, but maybe it should be. Needless to say, I bought him his own vanilla lip balm so that he, too, can smell like Peeps, especially since we reapply it at least a half dozen times per day.

In addition to grooming, Ed and I help Alex with cleaning his eyeglasses; choosing his clothing every day; getting dressed because he cannot properly manipulate buttons, zippers, or shoelaces; doing his laundry; filling out forms because his handwriting is illegible; managing his finances; buying whatever he needs; setting up appointments; refilling and administering his medications; and chauffeuring him because he cannot drive. Last week, I had two people who needed to speak to Alex on the phone, and I had to explain that I am his voice because his language skills are impaired. I was half-tempted to put him on the phone to prove my point but instead explained that I have medical power of attorney and can advocate for him. One remained unconvinced of my authority and will be receiving a letter and a copy of the legal paperwork in the mail next week. Add personal secretary to my list of tasks.

Another area in which Alex needs help because of his limited dexterity is preparing food. For safety reasons––to prevent burns and severed fingers­­––we fix all of his meals for him and cut his food into bite-sized pieces. Apparently, he realizes the value of our assistance in this area because if he thinks he has annoyed me, he always asks if I will make him a fruit smoothie that evening. Apparently, smoothie maker is one of my more important daily jobs in Alex’s estimation.

As we strive to make Alex’s life the best it can possibly be by helping him complete the daily tasks he cannot do on his own, we pray that one day he will overcome the present obstacles and be able to do things independently. In the meantime, I have remembered to walk more carefully and to take good care of myself, knowing Alex relies upon me to be surefooted enough to help him with tasks most people take for granted. I look forward to the day when I hear him singing “Shaving Cream” while shaving his own face, followed by applying his own Peeps-scented lip balm, and making his own fruit smoothies. Maybe he could even make a fruit smoothie for me while he’s at it. Now, that will be an accomplishment worth celebrating!

“Our lives are in His hands, and He keeps our feet from stumbling.” Psalm 66:9

National Family Caregivers Month

 

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.

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

Level of Care

Earlier this month, we had to complete a level of care needs assessment survey for Alex with the help of his caseworker assigned by the state to manage his disability funds. By answering a series of questions about what he can and cannot do, we provide information used to determine the amounts and kinds of support services he needs. At this point, Ed and I are providing nearly all of these services ourselves, but when Alex eventually goes into supported living, this information will be vital to making sure that his needs are met. While it’s sometimes difficult to admit that Alex can’t do certain basic tasks, we know we must be honest in conveying his needs to be true advocates for him. In the past year, he has made good progress in improving his behavior, but he still needs quite a bit of care on a daily basis. As I explained to Ed’s sister last week when she was here visiting, in many ways, Alex is just a giant toddler.

One of the primary areas of needs assessment is self-care. Because Alex has poor fine motor skills, despite years of occupational therapy, he still needs a great deal of help completing basic daily tasks to take care of himself. Moreover some of the medications he currently takes hinder his motor movements, requiring that we assist him. For example, Alex can undress himself, but he lacks the motor planning skills to dress himself independently. If we place a shirt on top of his head, he can pull it over his head and with some help place his arms in the sleeves. Similarly, he needs us to hold his pants so that he can step into the legs. Since he hasn’t mastered zipping, buttoning, or tying, we have to fasten his clothes for him. For this reason, he usually wears clothes that require no fastening, such as slip-on shoes, t-shirts, and track pants with elastic waistbands.

While we are fortunate that Alex can use the toilet independently and never has accidents, we still have to remind him to close the bathroom door, make sure his pants are pulled up all the way when he’s done, and wash his hands afterward. Another self-care issue requiring our help and supervision is grooming. Alex likes to be clean and neat, but his fine motor skills again hinder him doing things for himself, such as shaving, cutting his nails, combing his hair, etc., so we must do these things for him. Thankfully, he enjoys being groomed, so he is very cooperative when we complete these tasks. In addition, we must supervise his bathing and tooth brushing, as he would only remember to clean small parts of himself, forgetting to wash/brush completely.  Specifically, even though he knows he has 32 teeth, he seems to only want to brush the front eight.

Although Alex can feed himself with a fork and spoon, he hasn’t mastered how to cut his food with a knife, which means we have to prepare most of his food for him. His shaky hands make pouring drinks difficult and spilling them a constant likelihood; therefore, we fix his beverages and put them in cups with lids and straws for him to drink. Besides the crucial feeding assistance, Ed and I must supervise Alex’s various medications that he takes throughout the day. While he is cooperative about taking the medicine, he is not capable of following the dosing schedule, and he needs for one of us to place the pills on his tongue so that he can swallow them. However, we are thankful that he can swallow pills, especially since he has to take so many of them every day.

Another area of needs assessment involves self-direction, such as planning. Since Alex’s verbal skills are limited, and his handwriting is nearly illegible, he relies upon me to make phone calls regarding his disability services, doctor appointments, prescription refills, and therapy session, as well as to fill out needed forms for him. As his “personal assistant,” I coordinate all of these important tasks for him and am thankful I’m organized enough to keep all of his appointments straight. The state has also appointed me as his authorized representative to oversee his disability benefits and keep track of money spent for his needs. In addition to contacting various professionals who help Alex, we must also provide transportation since Alex can’t drive or ride a bicycle. Moreover, his lack of judgment when it comes to safety issues means that we still have our childproof locks engaged on the back doors of our cars so that he can’t suddenly open them.  Also, we don’t trust him to walk alone because he is seemingly oblivious to traffic and could easily get hit by a car if he weren’t paying attention.

Alex has other safety concerns, as well, that we must address. To prevent him from getting into things that could hurt him, we have childproof covers on our basement and garage doorknobs so that he cannot go into those places without our supervision. In addition, we still have some of our cabinets secured to prevent him from getting into potentially dangerous things. Because he called 911 a few times to see what would happen when he was younger, we have hidden our phones so that he cannot call in false alarms. In addition, we have hidden away in boxes most of our breakable knick-knacks after he went through a phase where he would throw things to get attention. Similarly, we keep our bedroom door locked at all times because in the past Alex had an annoying habit of dumping my jewelry box onto the floor, making a mess. Although he is probably past that destructive stage, we have not tempted fate. Once again, we have had to make our house toddler-proof, or in this case, Alex-proof.

As we look toward the future, we anticipate that Alex will continue to make good progress with his behavior so that we can trust him more and gradually ease restrictions around the house. We also hope that his motor skills will improve so that he can do more tasks independently and safely. Until he is ready to do things for himself, however, Ed and I will continue to walk a step behind him, making sure that all his needs are met.

“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.”  I Peter 5:2