Life can be challenging for families of kids with autism – but it can still include fun, friends and extended family.
Some families may isolate themselves, sacrificing family gatherings, holidays and vacations because they don’t know how to set the stage for a stress-free time.
It’s not a simple task, but it can be accomplished if you accept, adapt and stay flexible.
Accept—Your child has special needs. Nothing will change that.
Adapt—Don’t forego family fun, but learn the triggers of negative behavior in your child, so you can avoid them.
Stay flexible—Things will not always go the way you’d like, so be ready to shift gears quickly.
To make the most of special family times:
- Know your child. Learn from past experiences. Keep a journal to help identify 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 an event with all of your children, you may need 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 along. If this doesn’t work, leave earlier than planned.
- Keep the “family” in family fun. You may have to forego some family occasions, but your entire family doesn’t have to. Find a way for your other children to attend, with you if 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 enjoy the party. Don’t feel guilty. That guilt can be harmful to the whole family.
- Rehearse the situation. Visit the site in advance, and scout out an area where you and your child can quietly retreat if needed. If you plan to visit a faraway amusement park, go to a local one first. See how your child reacts. Note sensory likes and dislikes. If you plan a beach vacation, find a local lake or even a sandbox where you can test your child’s reaction to sand and extended exposure to sun and water. A child with autism can experience sensory overload very easily. Sand between his or her toes may be unpleasant.
For a verbal child, talk through what will happen that day. Arrange secret signals and honor your commitment to respect those signals. If you have to leave, remember that face-saving can be very important for older children with autism. Offer an age-appropriate reason why your child may not participate fully in the event.
Here are some more tips:
- Be realistic. High-stress vacations with multiple events and moves or long travel plans will not work with your child. If you’re planning such a vacation, consider respite care for your child with autism. Visit respite agencies until you find one that makes you feel comfortable. Again, don’t feel guilty. Your entire family will suffer if your other children have to sacrifice their vacation.
- Keep it simple. During your trip, plan to arrive early or late to avoid crowds. Avoid tight schedules. Some destinations accommodate children with autism. For example, Disney World offers separate waiting areas for rides, away from crowded lines. Call ahead to see if your destination offers this, and always travel with a doctor’s note, in order to gain access to these areas.
- Remember familiarity. Always bring along items that your child enjoys, like favorite foods and comforting toys.
- Stay with the routine. Children with autism like routine, so try to keep one as much as possible. 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 hour, then maintain that routine.
- React to distress signals. If you see that your child is becoming overwhelmed, respond promptly. This doesn’t mean the entire family has to stop what they’re doing. One adult can accompany your child back to the hotel, while the other continues the day with your other children.
With proper planning and a flexible mindset, everyday events, family gatherings and vacations can create wonderful memories for families that have a child with autism.
Dr. Caroline Eggerding is vice president of clinical services and chief medical officer for Bancroft, a leading nonprofit organization serving children and adults with autism and other neurological challenges. With over 30 years of experience in developmental pediatrics, Dr. Eggerding is responsible for leading and overseeing medical and clinical activities throughout Bancroft, ensuring that the organization provides person-centered care that promotes independence, community relationships and a healthy lifestyle. Dr. Eggerding is currently chairman of the New Jersey Governor’s Council for the Research and Treatment of Autism.
Based in Haddonfield, N.J., Bancroft provides special education, vocational, residential and day services to more than 1,300 people annually. Visit them on the web at www.bancroft.org.