Many parents find it helpful to have regular “team meetings” with all the professionals involved in their child’s care. The team meetings help keep all the team members on the same wavelength—focusing on similar goals, handling behavior problems in similar ways, learning from and listening to each other. You have the right to ask for a team meeting at any time, to review your child’s IFSP or IEP, and to discuss progress. Other ways to help your team work together include these:
1. Have a notebook that stays with your child throughout the day, so that teachers, therapists, and family members can make notes about your child’s behavior and progress.
2. Ask your child’s intervention team to send you information about your child’s progress each week.
3. Some “tech-oriented” families even set up a blog or website on which different team members as well as the parents can communicate what they are working on, describe what has been effective (or not), and offer tips that can be helpful for the other providers. This is a place to share problems and victories as your child begins to develop new skills.
In this chapter we have provided basic information on setting up an intervention program for your child. For further reading, we have provided lists of excellent websites and books on the topics covered in this book (see the Resources section at the back of this book). Up to this point we’ve been focusing on your child. But what about you? Like your child, you and your family need special attention as you meet the challenges ahead. By doing so, you will be less likely to experience “burnout” and will be better able to meet the needs of your child with ASD and the rest of your family. The next chapter provides strategies for making sure that you and your family stay healthy and balanced, in spite of the stresses that come with raising a young child with ASD.
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1Law, P. Interactive Autism Network Survey. Presented at the conference on Ethics of Communicating Scientific Findings of Autism Risk, Drexel University, Philadelphia, PA, October 6, 2009.
2If you have trouble accessing this information on a computer, you can call 888-AUTISM2 (888-288-4762) and speak with an Autism Response Team Coordinator. The 100 Day Kit will be sent to your home for free.
3Committee on Educational Interventions for Children with Autism, National Research Council. Educating children with autism. Washington, DC: National Academy Press, 2001.
4Adapted from Librera, W. L., et al. Autism program quality indicators: A self-review and quality improvement guide for programs serving young students with autism spectrum disorders. Trenton: New Jersey Department of Education, 2004. Available at www.eric.ed.gov.
5James, E. J., et al. (2008). Sleep hygiene for children with neurodevelopmental disabilities. Pediatrics, 122, 1343–1350, 2008.
6Emond, A., et al. Feeding symptoms, dietary patterns, and growth in young children with autism spectrum disorders. Pediatrics, 126(2), e337–e342.
2
Taking Care of Yourself
and Your Family
As Carmen and Roberto scrambled to put together the best intervention plan for Teresa, their 3-year-old with autism, several weeks flew by in a flurry of phone calls and appointments. Luckily, Carmen worked the afternoon shift, 3:00 to 11:00 p.m., so she was home during the morning and could make phone calls. All the focus was now on Teresa. Roberto worked the early shift, 6:00 a.m. to 2:00 p.m. The parents saw little of each other except on the weekends. When they had any time together, Carmen tried to tell her husband what was happening with Teresa—all the appointments, all the new people, the advice others were giving her about how to handle Teresa’s tantrums and how to help her communicate. It seemed as if Teresa was all they were talking about now, and Roberto felt distant from it. He wished this would all pass, like a bad dream, and life would go back to when he had a happy wife, a close marriage, and a life that was smooth and easy. He worried about his ability to take care of his wife, son, and daughter in the face of this new, unknown, and scary future.
Carmen was living this new life, every waking moment. There was little time to talk about anything else, even 5-year-old Justino, who had just started school. Carmen soon started to have trouble sleeping. She lay in bed worrying about Teresa. Would the intervention program they had found really help her? Would their health insurance cover the expenses? Would she need to quit her job to focus on Teresa and Justino? How could they afford that? Her mind was swimming with questions and worries, and her eyes filled with tears. She looked over at Roberto and felt far away from him. He had become quieter and quieter. They rarely laughed and had fun together any more. He was staying late at work more often. She couldn’t blame him for wanting to avoid the challenges they were facing, but she needed him more than ever now.
And what about Justino? He went to kindergarten in the morning, and Grandma picked him up afterward, since Teresa had therapy until noon far away from Justino’s school. Grandma brought him home at 1:00 P.M. and stayed with the children until Roberto arrived home at 3:00 or so. Carmen felt as if she hardly saw Justino any more except to send him off in the morning.
She pulled the covers over her head and buried her face in the pillow. She wished she had someone to talk to about all this, but it was difficult to talk to her family and friends. They told her that she was overreacting, that the doctors were wrong, that she was spending too much time with Teresa. No one knew what she was going through. She needed advice from her mother, help from her family, and love from her husband. She needed all the energy she could muster. For the first time, she was going to have to draw a lot more people into her family circle. Would she be able to find people who understood what they were going through—people who could help with Teresa and even give them a break now and then?
ADJUSTING TO CARING FOR A CHILD WITH ASD
The feelings that Carmen and Roberto were experiencing are the feelings of many parents who are adjusting to having a child with ASD. Research has shown what families of children with ASD have been telling us for years: Caring for a child with ASD can be very stressful! But many parents have also told us that it can be rewarding and fulfilling—not in the first few worried, hectic months, perhaps, but after that, as new routines get set, as children start to progress, and as the future becomes brighter.
During the first several months or even years after learning that your child has ASD, it is tempting to put aside your own needs and those of other family members while you focus on your child with ASD. It is, however, very important to take some time to consider the needs of your whole family, including yourself. It’s tempting to put yourself at the bottom of the priority list. Don’t do it! Taking care of yourself is the only way you’ll be able to take care of everyone else. Therefore, it’s important that you frequently take stock of how you are doing and take steps to ensure that you are healthy, both physically and mentally.
The prospect of taking care of yourself, your spouse or partner, and your other children may seem overwhelming when you feel that you’re devoting every minute of the day to your child with ASD. We won’t pretend it will be easy, but our experiences with numerous parents who have faced the same challenges have taught us some tips for adjusting to having a child with ASD. In every way we can, we try in this chapter to describe some strategies that may make it a little easier to handle all that’s on your plate: from the daily management hassles, to the tough balancing act of staying close as a family, to finding some of the rewards and fulfillment that lie along this new path you are taking.
TAKING CARE OF YOUR FAMILY
Everyone in your family will be affected by the new path that ASD has carved out for you, but the impact does not have to be negative, especially after you’ve gotten through the initial adjustment period. For most parents, especially during that adjustment period, the biggest impediment to maintaining healthy relationships and keeping the family strong and united seems to be time—time to spend with each other and time to communicate. Of course, finding the same amount of time for your other family members now that you
’re trying to help a child with ASD is challenging. Fortunately, parents who have been through it have shared ideas that can help.
Fostering Your Marital Relationship1
Does the challenge of raising a child with ASD have a negative effect on marriage (above and beyond the effects of having a child without special needs)? Not necessarily! In fact, research2 based on hundreds of families of children with ASD from early childhood until young adulthood showed that there was no difference in divorce rates of couples with and without a young child with ASD. (As the children reached late adolescence and adulthood, couples of children with ASD were somewhat more likely to divorce, but it is unclear why this was the case.)
The added pressures of taking care of a child with ASD often result in less time for your primary (marital or long-term) relationship—time that has already been reduced by the needs of young children. You may feel as if you have no choice here. The needs of your child with ASD may have to come first right now, but if you leave your partner on the sidelines, you’re denying yourself a critical member of your social support network. Additionally, managing this huge new challenge outside of the partnership can start to distance the two of you at one of the most significant points in your relationship. A few guidelines are particularly important to follow at this early stage after your child’s diagnosis.
Communicate!
Talk to each other. Because you are so caught up in the issues involving your young child with ASD, it is hard to think about, or talk about, anything else.
Roberto felt as if Carmen was living the new life that had been thrust upon them and had completely left the old one. He himself felt caught between two lives. The old one was gone, and a new one, seemingly much less satisfying, was on the horizon—unknown, stressful, and scary. While Carmen was living it, he was only hearing about it—and not much else from his wife. For Carmen, this was all she could think about. She wanted to share it with her husband, but he didn’t seem very interested. It made her angry that he was not joining her in all the decision making and stress she now faced, and she felt distant from him in a new way.
It’s important to share other parts of your lives in your communications. When you see each other after your separate daily routines, make a point of asking about the other things that matter to each of you: “How was work today?” “What do you think we could do for fun this weekend?” “Do you still have a cold?” “Did you talk to your mother on the phone today? What’s new with her?” Really listen, and try to join your partner in his or her life when you talk. Try hard to spend just a few minutes each day together, focused on each other, before launching into the subject of the children.
Listen
When your partner is talking, listen quietly. Don’t interrupt or judge. Try restating what your partner has said to make sure you’ve understood his or her perspective and feelings. For example, if your partner tells you about a problem he or she experienced that day, refrain from criticizing and telling your partner what to do. Instead, it’s more helpful to restate the highlights of your partner’s message and offer support, saying something like this: “It sounds like you really had a rough day. You sound tired and upset. How can I help?”
It’s very common for parents to have disagreements about their child with ASD. They may have different opinions about the diagnosis, what type of intervention to use, discipline, and expectations. For these kinds of disagreements, the first step is choosing a good time to talk them through, so you can really hear what your partner is thinking. The second step is really listening to the other’s point of view and taking it seriously, rather than thinking that your partner doesn’t know or understand. For example, if your partner makes a suggestion about a new treatment that you disagree with, try to respond by eliciting more about why your partner thinks it’s a good idea, rather than dismissing the idea or criticizing your partner. Listen closely to hear each other’s reasoning, and search for a midpoint or convergence between your two views, or another solution that works for both of you. If coming to a decision requires information about your child that one or both of you need, see if you can find a time to sit down together with your service coordinator or a team member to ask questions and gather the information you need. If you are having trouble hearing each other or finding a common ground, see if you can meet with a psychologist or social worker on your child’s team to come to a more shared point of view. But before you seek others’ help, try hard to hear each other out openly and respectfully.
Show Your Partner That You Care
Showing acceptance of and empathy for your partner’s feelings, and expressing interest in what’s going on in his or her life, are important ways to show that you care. Dr. John Gottman, a renowned marriage expert, stresses the importance of the small day-to-day interactions that we have with our partners. These everyday exchanges are the foundation on which strong marital relationships are built. See if you can find some way to do or say things that are thoughtful, caring, and supportive daily. Dr. Gottman’s research has shown that these ordinary but loving gestures act as deposits in your “emotional bank account.” Having a full emotional bank account can help each of you now, during this ongoing stress, and when inevitable conflicts arise. You have something to draw upon. Take what you need, and deposit as much as you can.
Keep Your Sense of Humor
Marriage experts have long recognized the benefits of maintaining a healthy sense of humor. Laughter reduces stress, feels good, and increases a sense of intimacy. Especially during an argument, humor (as long as it doesn’t attack or put the other person down) can relieve tension and lighten the situation. As silly as it might sound, even watching funny movies together helps bring people together and relieve stress. Seek out ways to laugh. Consider a “Friday Family Comedy Night,” when you take turns picking out a comedy film to watch together.
Make Time for Your Relationship
Is making time for your relationship easier said than done? Definitely—but it’s not impossible. Try to carve out some regular time that is devoted specifically to being (1) together with your partner, (2) free of the distractions of children, and (3) enjoyable for you both. Spending just a few minutes each day involved with each other can really help connect you after a tough day and open you to hearing about each other’s lives—both the joys and the sorrows—in a caring, nonjudgmental, and honest way. When friends or family members ask what they can do to help, ask them to come over to give you a little “couple time,” or ask if you can drop the children over for a little while with them. Making time for your relationship involves finding help with the kids that you trust. If there is no one to help, ask your service coordinator or a team member for ideas. In some places, respite care is available for children with ASD, and there are a number of resources you can turn to. We describe these next.
Use Respite Care
Respite care is a term for babysitting or other short-term care provided to an individual with a developmental disability (or other chronic medical condition), so that the family members can get some time away from the daily routines of caring for the individual. Respite care can be very helpful in relieving stress and providing an opportunity to take a break and spend time by yourself, with your partner, or with other family members. It’s a time to recharge your batteries, relax, and take care of yourself and the rest of your family. You can find a respite care provider through the National Respite Network and Resource Center (see www.archrespite.org). The website offers a National Respite Locator Service that will help you locate respite care services in your state. Services are provided by trained, sometimes licensed, employees of these agencies. Many programs are provided by local organizations such as churches, school, and other nonprofit organizations. Respite care can be provided in or out of the home. Respite care programs often offer training for friends and family members in how to care for a child with ASD, so you can call upon a friend or relative to care for your child.
In addition to respite care, there are re
sources to turn to for the occasional night out. Ask people at the local autism association or parent group for references. Ask other parents that you meet about child care. Many parents have experienced, skilled people working with their children with ASD who might provide babysitting for you. If you have no other leads, call a college near you; ask for the psychology, social work, or child development department; and ask if there are students who would be willing to babysit for a child with ASD. Have a prospective sitter come over to play and meet your child ahead of time. See how the student interacts with your child. Ask for references. Then slowly let the student provide some care while you and your partner get some time together.
Leaving your young child with ASD with someone else for a little bit is not neglecting your role as a parent. It provides something positive for your child. First, it gives your son or daughter a refreshed parent. Second, it provides benefits on its own. It is quite important that all children learn to accept care from other adults. It helps them learn that the world is a place to be trusted. It helps them get ready for preschool. It is a growing experience for children and for parents, and it is a superb learning experience for the students involved. Two of us (S. J. R. and G. D.) got into this field through babysitting experiences we had as teenagers. Help others learn about ASD by sharing your child with them.
What about Your Other Children?
Carmen was losing a lot of sleep worrying about whether she was neglecting her other child, Justino. And she missed the time they used to have together before Teresa was born, just the two of them. She had so much fun playing with Justino. He made parenting so rewarding. Now everything she had to give—all her energy and all her time—seemed to go to Teresa. She missed time with Justino, and he was talking about missing time with her. She didn’t want him to suffer because of his sister’s diagnosis.
An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn Page 4