Navigating Daily Life - Parenting Children with Disabilities
Video: Navigating Daily Life
Every day is different when you’re parenting children with disabilities or special health care needs. Routine things you did before were probably second nature to you, like grocery shopping, running errands, or eating out at restaurants.
You might now be asking yourself many questions, including:
How do I get the necessary things done while caring for my child?
How does my family go out in public and do the things we like to do or have to do?
What if someone stares or says something hurtful or rude?
How do I handle my child’s difficult behaviors?
As overwhelming as it might feel sometimes, there are ways to make daily life and public outings easier. It just takes some planning and flexibility on everyone’s part.
Daily life is also about coping with and understanding grief and other emotions that are part of your journey. It’s about knowing when to ask for help so that you, your spouse or partner, and your children can thrive and have time for relaxation and fun.
For example, spend quality time as a family such as having a weekly pizza and game night. And most of all, take people up on their offers of help:
Have them come with you to the doctor or when running errands to help you entertain your child and manage logistics.
Let them cook with you or bring dinners that you can freeze.
Let them watch your children so you can have alone time, or one-on-one time with your spouse or other children.
Tips for Public Outings
When possible, go out during off-peak hours, especially if your child has sensory processing issues. To make it more enjoyable for your child and family, pick less busy times to go to stores, restaurants, parks, zoos, children’s museums, and other public places.
Bring another adult with you, if possible. Whether it’s your spouse, a friend, a grandparent, or a caregiver, having someone else to help will go a long way in lowering stress.
Try using social stories (see this page’s Suggested Links section for examples) so your child knows what to expect ahead of time: before a trip to the grocery store, a doctor’s office, a vacation road trip, a play date with a friend, or some other outing. Remember to include a reward at the end of the story to motivate your child to do well. Many websites offer free social stories you can print or download. Simply Google “social stories for children with special needs” or check out the One Place for Special Needs website.
Pack food from home, especially if your child has special dietary needs. Bringing along favorite snacks can help reduce meltdowns, and you won’t have to worry about food allergies or too few choices in public. Don't forget snacks for yourself and the rest of your family too!
Bring a “bag of tricks” for long waits or when your child gets fidgety or upset. Pack things that are fun, entertaining, or calming. Some parents find these helpful: magnetic travel games, finger puppets, keys or fidget toys, apps on your smartphone or tablet, the social story that goes with your outing, and headphones with calming music.
Think ahead about how you will handle stares or rude comments from strangers. You can choose to ignore them or use them as teachable moments such as the one described in the parent quote on this page. Other parents have created fact sheets about their child’s disability or special health care needs to hand out to staring strangers, or have prepared to just tell them what life is like with their child. Sometimes, it’s even okay to just be rude back.
Follow your child’s lead and always have an exit strategy in mind. Watch for cues that they are no longer having fun and know where the closest exits are. For example, if you’re at a restaurant, ask the waiter to bring the check along with the food, so you can pay in advance. Or, if they’re on a play date with friends and parents, watch for cues that they are no longer having fun and know when it’s time to leave.
Dealing With Your Child’s Difficult Behavior
Everything children do is their way of communicating needs and wants. This includes difficult behavior. Children with disabilities or special health care needs sometimes have more challenging behavior because of their limited communication skills or sensory overload. See our Behavioral Health page, and ask your child’s doctor or therapist for behavior strategies specific to your child’s diagnosis. We have also gathered some helpful tips from other parents.
Try to answer these questions:
Why does the difficult behavior happen?
When does it happen?
What happens right before the difficult behavior?
Where does it happen?
How can I help my child redirect to acceptable behavior?
Help your child with transitions. Let them know ahead of time what to expect. For example: “You have 10 more minutes of screen time. When you hear the timer go off, that means it’s time to turn off the TV.”
Use a behavior chart with rewards – one that is easy for your child to follow. Focus on and tell them what they are doing well. For example: “I like the way you played with your brother when we were at the park. You did a good job taking turns.”
Show your child a clear reward system to make directions easy to understand and help reduce meltdowns during transitions. For example: “We’ll go outside to play after you put your toys away.”
Daily Coping Tips
Day-to-day life can be stressful and overwhelming for anyone. Emotions and feelings can change daily (or hourly!), and you might feel grief, anger, denial, resentment, anxiety, or depression. Give yourself permission to feel. We think these tips might help:
Talk about your feelings with a trusted friend, therapist, or support group. Keeping feelings inside will only make things worse and cause more problems later.
Get your other children involved in a sibling support group either in person or online, or help them find a counselor to talk to. See our Siblings page for links to sibling support groups.
Make your self-care a priority and find healthy ways to recharge your batteries. You won’t be much help to your family if you’re exhausted and run-down. Learn more about self-care.
Ask for help. Accept help and support when people offer. Look into respite care. Respite means taking a break from the daily challenges of raising a child with disabilities or special health care needs.
Find ways to relax and have fun as a family. Get in touch with nature, have a weekly game night, or ask your children for other fun ideas.
Coping With Common Emotions
Know that grief and other emotions are part of your daily journey. Learning how to cope with them includes knowing when to ask for help so that you, your spouse or partner, and your children can thrive and have time for relaxation and fun.