Life can be challenging for a family that embraces a child with autism. Some may isolate themselves, sacrificing family gatherings, holidays and vacations because they do not know how to set the stage for a stress-free time.
It is not a simple task but it can be accomplished if you accept, adapt and be flexible.
Accept: Your child has special needs. Nothing will change that.
Adapt: Adapting does not mean foregoing family fun times but rather learning the triggers of negative behavior in your child with special needs so that family celebrations do not dissolve into painful, chaotic experiences.
Be flexible: Things will not always go the way you want them to, so be ready to shift gears quickly, if necessary.
There are steps you can take to make the most of those special family times.
• Know your child. Learn from each past experience. Keep a journal if necessary to know what events, sights and sounds trigger negative behavior. Your child may not be able to handle certain experiences no matter how well prepared you are. If you want to attend the event with all of your children, you may have to limit your time there. Watch for distress signals. If you see any, move your child to a quieter area where he or she can play with a comforting toy you brought with you. If this does not work, be flexible and leave earlier than planned.
• Keep the “family” in family fun. You may have to forego some family occasions — but not your whole family. Find a way to see that your other children can attend, with you if at all possible. Is there a caregiver you could hire to stay with your child with autism so the rest of the family can enjoy the celebration? If so, do it and attend the party and enjoy yourself. Do not feel guilty. That guilt can be detrimental to the whole family.
• Rehearse the situation. The rehearsal visit offers an opportunity to scout out an area where you and your child can quietly retreat if you see over stimulating activity is taking a toll. If you plan to visit an amusement park, then find a local amusement park. See how your child reacts. Note sensory likes and dislikes. If you plan to vacation in a seashore area, find a local lake or even a sandbox where you can test how your child reacts to sand and long exposure to the sun or the water. A child with autism can experience sensory overload very easily. Sand between his or her toes may be unpleasant.
For a nonverbal child, visit the place where your family outing will be held ahead of time. For a verbal child, talk through what will be happening that day. Arrange secret signals and honor your commitment to respect those signals. Remember that face-saving can be very important for older children with autism. Offer an age-appropriate reason why your child may not be participating fully in the event.
• Be realistic. High stress vacations with multiple events and moves or long travel plans will not work with your child. If you and your family are planning such a vacation, then consider respite care for the child who could turn your enjoyable time together into a time of tears and tension. There are many sensitive, reputable organizations that offer respite care. Visit them until you find one with which you are comfortable. Do not feel guilty. Your entire family will suffer if your child with autism becomes out of control and your unaffected children have to sacrifice their vacation.
• Keep it simple. During your vacation, plan to arrive early or late to avoid crowds. Avoid tight schedules. Some destinations accommodate children with autism. For example, Disney World offers a separate area when you can wait out of crowded lines. You should call ahead to see if your destination offers this, and always travel with a doctor’s note because it will be needed to access these areas.
• Remember familiarity. Always bring along items that your child enjoys, such as favorite foods and comforting toys.
• Stay with the routine. Children with autism like routine. If your child is used to wearing certain clothes on specific days of the week, getting up at a certain time, eating certain foods for breakfast and napping at a certain time, then maintain that routine.
• React to distress signals. If you see that your child is becoming overwhelmed, respond promptly to the signal. This does not mean the entire family has to stop what they are doing. One adult can accompany your child back to the hotel while the other continues the day with your other children.
DR. CAROLINE EGGERDING is vice president and chief medical officer of Bancroft NeuroHealth, a facility founded in 1883, which annually serves more than 1,200 children and adults with developmental disabilities, brain injuries and other neurological impairments. www.bancroftneurohealth.org.