It was the closing circle of our annual retreat for parents of children with autism, the culminating moment of the weekend, when parents, laugh, weep, and share what they have learned from each other. One by one, parents reveal what they hope to take back home to better their life and their children’s lives. Now it was Sandy’s turn.
She slowly lifted her head from her hands, her face flushed and red with tears. Her voice quivering, she said, “For the past few years, I have stayed up almost every night until 2 or 3 in the morning searching the internet for the next treatment breakthrough, for the cure for my 7-year-old autistic son. I’m drained, exhausted, depressed. I have no time for myself, no time for my relationships with my husband or friends… and I’m scared.”
In varying degrees, autism reshapes the lives of families. However, when the balance shifts to an extreme focus on autism, too often activities abandoned first are the ones that are most helpful for you, your child and your family. Maintaining balance is crucial not only for your family, but for you, and ultimately, for your child with autism. The following are some suggestions to be mindful of.
1. Stay connected. At the top of the list of stressors reported by parents is the feeling of being isolated and alone, that nobody can understand what you are going through. Connecting with other parents through autism organizations, or through your school or religious community can provide compassionate support and new friendships to help prevent a sense of isolation.
2. Surround yourself with people who convey positive energy. Take the advice of one wise dad, “We’ve learned to avoid the ‘doom and gloom’ crowd. Some parents and professionals only look at the cup half empty, and can be major sources of anxiety. On the other hand, those who sugarcoat autism and dismiss your valid concerns also may not be of help. Other parents or even relatives who believe that they have all the answers may actually cause greater stress. Choose to be with people who offer helpful, well-reasoned advice based on respect for you and your child, and are realistically optimistic about the future. Spending time with those who also have an appropriate sense of humor can also be of great help.
3. Take care of your physical and mental health. A healthy diet, sleep, exercise and other activities that are good fit for your lifestyle should be a high priority. Caring for your self will provide the energy you need in managing stress and worry that many parents experience. We all deal better with emotional challenges when we are mentally and physically prepared to do so. If you have a partner, plan times in your schedules that separately, or together, can meet these needs.
4. Ask for help when needed and accept help when offered. You may feel that you need to take on the full burden of raising and caring for your child or family member. It does take a village, so when reasonable offers of assistance come your way, especially from those whom you trust, accept the support. Do not be shy about asking for help when needed. Whether it’s a sleepover for your child so you can get away overnight, or even for a few hours, it will not only help you (and your partner), but it will help friends and relatives who need to feel they can be helpful.
5. Be appropriately assertive, not aggressive. Autism is a passionate affair that results in many strong emotions. Your parental instincts drive you to protect and raise your child with all the supports that are necessary to maximize his or her potential and happiness. At times, however, you will encounter professionals or others who frustrate or even anger you due to their insensitivity or incompetence. If such people play an important role in your child’s education and care, strive to be assertive in a manner that focuses on your child and his or her needs, and avoid personalizing conflicts that may arise from differences of opinion. When it becomes difficult to engage directly, or you feel it is a lost cause, seek other persons of authority to help resolve any challenges or difficulties.
6. Take the long view. Development for people with autism is “life-span” as it is for all of us. The often stated, but inaccurate “Window of Opportunity” hypothesis–that a child must make so much progress before the window of development closes by 3 or 5 years of age—has resulted in an inordinate amount of unnecessary stress and anxiety for parents. More often than not, children with autism make far more progress over the years than parents are told to expect when the child is very young. Speaking with parents who are further down the road often provides hope, and a sense of comfort. But as noted above, it is important to connect with those parents who have an optimistic and positive outlook.
7. Focus on what makes sense for your child or family member. Autism is not a disease, it is a behavioral diagnosis and as the cliché goes, “once you’ve met one person with autism, you’ve met one person with autism.” There are no treatments or medications that are right for every person who receives an autism diagnosis. Trust your gut about what makes sense for your child.
8. Reflect on the journey. We have chosen this theme for our annual parent weekend retreat as it is so beneficial for parents to have time to reflect on their family’s journey from a distance, apart from the everyday stresses of our cluttered and frenetic life styles. As one parent shared, “Having a child or family member with autism is like a run-on sentence. We need to put a period at the end of that sentence to see how far we have come and think about where we are going”. When parents are able to do that with their partner or with other parents during a get away time, it allows space to celebrate the progress or the challenges that have been overcome, to express appreciation for each other and for those who have been helpful, and to make resolutions for the family. By doing so, we are more likely to appreciate that, despite the challenges that autism may bring, there is also so much love, learning and growth that enhances our lives due to the experience of autism.