Navigating Daily Life - Parenting Children with Disabilities
Video: Navigating Daily Life
Each day is different when you’re parenting a child with a disability or special health care needs. You might be wondering how to do all the things you did before that 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?
As overwhelming as it might feel sometimes, there are ways to make daily life and public outings easier. It takes some planning and flexibility on everyone’s part so you and your family can thrive and have time to enjoy life together.
Daily Coping Tips
Day-to-day life and parenting can be stressful and overwhelming for anyone. Your emotions and feelings can change daily or hourly! They might include grief, anger, denial, resentment, hope, joy, disappointment, 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. (See our page on The Power of Counseling.)
Get your other children involved in a sibling support group either in person or online, or help them find a counselor. See our Siblings page for links to sibling support groups.
Make your self-care a priority. 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. And accept help and support when people offer it. Look into respite care, too. 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. Maybe get in touch with nature, have a weekly game or pizza night or ask your children for other fun ideas.
Letting Others Help
Many different emotions will be part of your journey. Part of learning how to cope with those feelings is knowing when to ask for help so that there’s time to relax and enjoy life too.
Most of all, take people up on their offers of help. For example:
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.
You might also start to build a personal network—a community of support around you. That way, you know who you can ask for help.
Dealing With Your Child’s Difficult Behavior
Everything children do is their way of communicating needs and wants. This includes their 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 pages on Behavioral Health, and ask your child’s doctor or therapist for behavior strategies for 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?
Transitions: 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.”
Rewards: 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.”
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, museums and other public places.
Add extra time to your plan, so you don’t feel rushed.
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 everyone’s stress.
Try using social stories (see this page’s Suggested Links section below 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. Do an internet search for “social stories for children with special needs.” Or check out ABA Educational Resources or Happy Learners for many examples.
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 a phone 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. Other parents have created fact sheets about their child’s disability or special health care needs to give to staring strangers or are ready to tell them what life is like with their child. Sometimes, it’s even okay to be rude back.
Stay aware of your child’s behavior and always have an exit strategy in mind. Know where the closest exits are. If you’re at a restaurant, ask the waiter to bring the check along with the food to pay in advance. Or, if they’re on a play date, look for signs that your child is no longer having fun and know when it’s time to leave.
And, above all, remember that you are doing your best, you are not alone and tomorrow is another day.