Time and energy - It can be hard for any parent to find "me" time. Parents of children with disabilities manage multiple doctor or therapy visits, research of their own, early intervention services or CSE meetings, and more.

Money for critical expenses - Special equipment, medicine, therapists, extra gas to drive to all those specialists—it all adds up. You may struggle with managing the care your child needs along with the demands of making money.

Adult friendships - Just like everyone else, parents need time to just kick back with friends and family without reference to the word "disability."

A babysitter - Some disabilities require sitters with specific expertise to meet your child’s support needs. Not only are such babysitters hard to find, but they may charge double or triple the going rate.

Reassurance - Most parents need a listening ear and a positive response when they feel nervous about their own choices and what the future will bring.

Exercise and nutrition - Exercise is, for many people, a huge stress reliever and a way to safeguard your personal health. The same is true of nutrition: if you can find ways to incorporate healthy foods into your regular diet, you will be doing good things for your own wellness.

Adapted from 11 Things Parents of Kids with Disabilities Need to Survive and Thrive

Create a list of needs. How many times have you heard someone say, "Let me know if I can do anything." And how many times have you said, "I will" — and then didn't? People want to help but they don't know how. Make a list of the things that would make your life easier.

Be honest about what you need. By letting people know about your situation, you're allowing them to enter your world. When you say, "Going to the hospital by myself is hard," you're giving a friend a chance to say, "Let me come with you."

Enlist other caregivers. Parents of children with disabilities often feel that they're the only ones who can handle their child's care. You could try finding or creating a parent group to make connections with people who might be able to swap babysitting time. By leaving your child with a trusted sitter, family member, or a friend, you are also teaching your child to handle change.

Consider respite. Respite services also may be available for your child. These services can include a caregiver coming to your home to give you a break for a few hours or overnight, or a drop-off program in the community.

Turn to the experts. Social workers can tell you about local services and support in your area that can help take the burden off you (and your bank account). This includes respite care, government benefits, family reimbursement, and other financial supports. Social workers also help with emotional support, including ways to practice self-care.

Adapted from Getting Support When Your Child Has Special Health Care Needs

Family advocates, like those at Starbridge, can support you in getting connected to services and resources. Please visit our website or contact us.

Ask specific questions. For example, ask how physical therapy is going.

Be inclusive. Asking us if we would like to meet at a playground that has adaptive equipment or to see a sensory-friendly showing of the latest kids’ movie sends that message that you want to include our entire family on outings.   

Be patient. If I don’t seem to want to talk about my child, know that I might not want to think about disabilities for that moment and would rather talk about which show I am currently binge watching instead. 

Be aware of cultural differences. My cultural beliefs or practices might be different from yours, and so the way I handle certain matters may look different or puzzling to you. At the end of the day, we all want our children to thrive no matter what paths we take along the way.

Offer to help. For example, watching my other children so I can spend a little more time at a doctor’s appointment, bringing over dinner for when my child is sick, or even bringing me some coffee and magazines when my child is in the hospital – all can be enormously helpful.

Treat us normally. Just because my child will never learn how to add doesn’t mean I’m not interested in hearing about how your child is a whiz at algebra. Your child’s achievements and struggles are just as important as my child’s. 

You don’t always need to know what to say or do. If you aren’t sure how you can help when I seem like I’m at the end of my rope, it’s okay. Sometimes I just need someone to listen, and sometimes I need a reminder that it’s okay to ask for help when I need it.

You can be curious. It’s okay to ask when you have questions. Although not every parent of a child with disabilities feels this way, I would rather people ask me anything at all about my child or our life with her than wonder or make assumptions.

Adapted from How to support a parent of a child with special needs