Caring for the Caregiver

By Dr. Elizabeth Reeve (with Elizabeth Verdick)

Elizabeth Reeve, M.D.

Your 13-year-old daughter just spent 45 minutes in the bathroom doing her hair while texting her friends in anticipation of her first big middle school dance. She’s focused on how she looks and wants to make a big impression tonight. Down the hall, your 18-year-old son with autism emerges from the other bathroom after a shower, having once again forgotten to wash his hair. He’s wearing the same clothes he had on before he took his shower. You notice the stain on his shirt from last night’s dinner. You approach him with a stack of clean clothes and instructions to return to the shower to wash his hair.

His response? “There is no reason to wash it now because it will just get dirty again later.” He’s logical. He doesn’t much care about his appearance or the impression he makes. And he’s reached the legal age to vote, but he still needs more supervision than his younger sister does.

worried or Nervous from Cloveapple on wikimedia commonsRaising a child on the autism spectrum brings a lifetime of challenges, ones you never expected, ones that keep you up at night wondering, “Will my child ever have the skills to live independently?”

I should know. I have a 25-year-old son with autism still living at home. Although he has managed to go to college and is on track to graduate from a two-year technical program, he likely will never drive a car, has never gone on a date, and relies on the family as his primary social network. He continues to need constant support and prompting to successfully negotiate daily living. On the other hand, he is independently using public transportation, can stay at home alone happily doing household chores and entertaining himself, and is always willing to pitch in and help with a family activity or project. A day does not pass when I don’t wonder about his future and what will happen to him when I am no longer here to help care for him.

Having a child with autism is a journey I did not choose, but I’ve accepted it by relying on a blend of love, humor, pragmatism, pride, advocacy, and hope. As I’ve seen throughout my career as a child psychiatrist, many parents of children on the autism spectrum face the journey in much the same way. Often, in the beginning, there is an unsettling inkling: “Is something wrong with my child?” Fear and confusion may delay the pursuit of a diagnosis. BotMultichillT_Adams_holds_his_three-year-old_son_while_(BCBA)_therapist_assists wikimedia commonsBut eventually the diagnosis comes, and with it strong emotions such as anger, panic, disappointment, sadness—and even a sense of relief, because there is finally an explanation for the child’s unusual behaviors. Time and again, I’ve watched parents receive their child’s diagnosis and push all their emotions aside because there is no time to properly grieve. Life becomes a full-throttle process of negotiating the many treatment plans and options, therapies, and educational programs.

Hope propels us forward. We hope they will learn to talk, to allow hugs, and to say “I love you.” We hope they will be able to learn in a school environment, make a friend, manage the emotional upsets, and gain a measure of independence. That hope is a gift, one that is essential for continuing the journey of raising a child who has special needs.

Hope isn’t enough, though. And hope comes and goes. It is interrupted by waves of sadness that must be acknowledged. We need that time to grieve—if sadness is ignored, we are left with feelings of helplessness and despair. Most studies suggest that 25 to 45 percent of mothers of children with developmental disabilities have clinically significant symptoms of depression.

EFMP_energizes_exceptional_education ASD by BotMultichillT wikimedia commonsIf you’re raising a child with autism, your primarily role is to be a caregiver. Because autism is a disorder that affects development, children on the spectrum fall behind in areas such as communication, social skills, emotional self-regulation, and self-care. Milestones are reached more slowly; some aren’t reached at all. The grief that a caregiver feels is real and comes most often at times when expected growth and development fail to occur.

My patients’ parents often tell me that the shift from elementary school, where the environment was more predictable, to a larger middle school is a very difficult transition that reawakens feelings of sadness. Suddenly their child with autism looks more obviously different. The “neurotypical,” or developmentally typical, students experience a sudden growth in social skills; their friendships and peer relationships become more complex, and they place more importance on appearance, status, and popularity. In comparison, kids on the spectrum may still be struggling with basic friendship skills and managing intense emotions. Parents ask me, “How can my child possibly fit in now?”

Students_Leaving_Central_High_School_by Adam63 wikimedia commonsAnother wave of sadness may hit these parents as their children enter high school. Neurotypical teens are talking about dating or where they want to go to college; limit-testing and risk-taking behaviors are more the norm. Milestones such as getting their first job and learning to drive become major goals. But what about teens on the spectrum? They may be far from ready to date or drive. Even for high-functioning children with autism, routine activities such as driving may be out of reach for them. Parents may worry whether their child will be able to graduate and live away from home someday. The whole family feels these losses, and each family member may deal with them differently. I’ve seen fathers grieve differently than mothers. I’ve seen younger, neurotypical siblings struggle with guilt as they reach milestones that their older sibling with autism has not.

The grief and guilt are normal. Allowing yourself to be sad or scared is a necessary step on your parenting journey. The recognition of this sadness doesn’t mean you have “given up” or “lost hope” for your child. And it doesn’t mean that things won’t get better. Your child is growing older but likely hasn’t outgrown the need for treatments and specialized services. Collaborate with experts to determine what is within reach for your child, and go from there. Keep that sense of hope alive. My son is working with a community-based job placement program that specifically helps adults with autism find jobs that will work uniquely for them. I cannot imagine how he could effectively seek a job with an agency that did not clearly understand autism and its implications for his day-to-day needs.

yoga_poses_stylized_clip_art_open licenseYour coping strategies are unique to you. One parent may cope by joining a support group, while another may increase exercise and relaxation. Many parents report that yoga, journaling, talk therapy, or prayer can help. Coping strategies such as increased social isolation, excessive alcohol use, or dropping out of previously enjoyed routines and activities are warning signs that you may not be responding well. Research shows that the mental health of a disabled child is correlated with the emotional stability of the caregiver. In other words, your child relies on your strength and support. If you find yourself using poor coping strategies, seek out more or better resources for yourself and your family.

Coping with autism is full of challenges. There will be times of sorrow but also moments of joy, closeness, and laughter. My journey with my son is not done. Over time I have come to understand that this journey will never be finished, but I cope better now than I did in the past, and I’ve learned to accept help—all the help I can get!

SurvivalGuideKidswithASDs2Elizabeth Reeve, M.D., is coauthor of The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents), wherein she contributed her medical knowledge and her experiences as a mother of a son who has autism. She is a child psychiatrist at HealthPartners in Minnesota, and her clinical work focuses primarily on children and adults with developmental disabilities. Elizabeth was named 2012 Psychiatrist of the Year by the Minnesota Psychiatric Society for her dedication to sharing her expertise as a teacher and a mentor. She lives in Minneapolis, Minnesota.

Elizabeth Verdick © by Free Spirit Publishing

Elizabeth Verdick is coauthor of The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents), in which she wrote from the perspective of a mother with a son on the spectrum and a passionate advocate for kids and parents in the autism community. She has been writing books since 1997, the year her daughter was born. These days she writes books for babies, toddlers, teens, and every age in between. She especially loves creating new board book series—the first books in the Happy Healthy Baby® series are now available. The Toddler Tools® series helps young children and their parents cope with those tough times and transitions that happen every day (like naptime and bedtime). Elizabeth lives with her family and five pets near St. Paul, Minnesota.

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