Advance directives are plans in writing that explain what you (or your child) want to have happen in an end-of-life situation. A living will is a letter explaining these plans and decisions. A Do-Not-Resuscitate (DNR) order means that you decide that you do not want medical professionals (like EMS medics, doctors, or nurses) to use certain lifesaving measures if your child has a medical emergency. Learn more on our When Your Child Passes Away page.
There are so many decisions to make when your child is very sick or you think they might be near death. Things like how and where they will spend their last moments, who will (or won’t) be there, whom you will tell and when, and the type of final arrangements they will have (like a funeral service, if they will be buried or cremated, and more). You can read more on our When Your Child Passes Away page.
It’s a good idea to try to think ahead and plan what you might say and do before you hear a rude comment or are in the middle of a crisis situation in public.
Here are some tips from parents on ways to deal with other adults:
Find more tips on our “When Others Misunderstand Your Child’s Behavior” page.
A supported decision-making agreement is a legal tool for children age 18 or older with disabilities or special health-care needs. It’s a document that says you will help your adult child with certain decisions. This agreement is useful when you want to talk to their school, bank, doctors, or other people in your child’s life about a decision or choice. Learn more about making a supported decision-making agreement on our Supported Decision-Making and Helping Your Child Make Decisions page.
You can use the supported-decision making process to help your child make decisions. There are 3 parts of a supported decision-making process:
When you support your child, you don’t make the decisions for them. You help them make decisions for themselves. Read more on our Supported Decision-Making and Helping Your Child Make Decisions page.
Person-centered thinking has 3 parts:
Things that are important TO your child make them feel happy or fulfilled in their life. Things that are important FOR your child keep them happy and safe. Learn more about using person-centered thinking to balance these 2 things on our Person-Centered Thinking page.
Person-centered thinking puts your child’s needs front and center when it comes to decisions or plans that affect them. It’s a way of supporting your child so they have as much power as they can to decide things for themselves. Learn more about how to use person-centered thinking with your child on our [Person-Centered Thinking](link to: Person-Centered Thinking) page.
Even though you and your partner can’t always snuggle with your baby the way you want to, there are ways you can connect:
See our When You Leave the Hospital Before Your Baby page for more tips on bonding with your baby in the NICU.
Here are a few tips for working with NICU staff:
See our page on When You Leave the Hospital Before Your Baby for more tips on working with the NICU staff.
To get your child (and you) ready for camp, there’s a lot of packing and preparing. Other parents have said that it’s a good idea to include:
There are 2 main types of camps: inclusionary (or mainstream) camps and camps designed just for children with disabilities or special health-care needs. If you’re thinking about sending your child to a mainstream camp, check on what day-to-day accommodations the camp can give. Although the camp may make ADA-required accommodations, not all camps will have staff trained to meet your child’s needs. See our Sending Your Child to Camp page for more ideas on finding out if a camp is right for your child.
There are times when you might want to talk to a counselor for a simple emotional tune-up. Other times you might want to deal with a more specific issue. See The Power of Counseling for Parents for life events are some life events when you, as a parent of a child with a disability or special health-care needs, might get counseling, and some signs that it’s more important that you get counseling.
Over time, your feelings and worries about your child can get very heavy if you are carrying the full weight of them by yourself. You might have less energy left to do things like talk with your child’s teacher, make an important doctor’s appointment, or just be patient with your child.
That’s where counseling can help. It’s a way to let go of some of that emotional weight. See The Power of Counseling for Parents for more ideas on how to find and use counseling.
When any parents get divorced, they need to have a legal agreement that clearly spells out what they are doing with child custody and money. When you have a child with a disability or special health-care needs, there are extra things to think about when you set up these agreements. You want to be sure that your child’s needs are still being met and that you, as caregivers, still have support. This affects almost every divorce-related decision. See Dealing with Divorce for a list of areas that need special attention.
Divorce isn’t easy for a child. Even if you do everything you can to meet their needs, they still have to deal with big changes. Children with disabilities or special health-care needs often have a harder time adjusting. Some of the symptoms of their disability might get more severe. Their behaviors might get more challenging. Maybe it seems like they’re having trouble with skills they already built. This is all a normal part of dealing with stress and change. See Dealing with Divorce to get tips on supporting your child.
To start the person-centered planning process, a group of people who are committed to your child get together to help your child plan for their future. This might be people from your child’s school, their medical team, caretakers, friends, family members, and you. The most important person in that group is your child. Most of the time the person-centered planning process includes a facilitator (or meeting leader) who will organize things and invite everyone. Find out more on our Person-Centered Planning page.
Person-centered planning (sometimes called PCP) is a problem-solving process for people with disabilities or special health-care needs. It includes a written plan on how your child can work towards their wants, hopes, and dreams. It helps your child get support and share decision-making with you and the other people who care for them. Find out more on our Person-Centered Planning page.
When your child has a disability or special health-care needs, some of your dreams might look different than what you thought––or they might not come true at all. This can be very hard, frustrating, and sad. Dealing with the loss of hopes and dreams is a lot like the grief process people go through when a loved one dies. You might go through the grief cycle more than once. See our Accepting, Grieving, and Adapting to Life Page for help.
You can find other parents of a child with disabilities or special health-care needs in your own city or across the country, just by searching online. They are in support groups, local community organizations, and online forums like Facebook pages or listservs (email lists). These groups might be general or focus on specific disabilities like Down syndrome or autism. Connect with other parents to find out more and use our search function to find other parents.
If your child has a disability or special health-care needs, creating a safe, comfortable home might take some special modifications. Waivers might fund some modifications. These waivers have some cost restrictions and possible exclusions. You don’t have to own your own home to make modifications. Visit Modifying Your Home for more tips.
Adaptive and assistive devices and technology can be truly life enhancing for many children. They are tools designed for people with disabilities or special health-care needs to help them do more, experience more, and build on their abilities.
There is a wide range of assistive and adaptive technology and devices. They can be high-tech, like an iPad app. Or they can be low-tech, like a wall calendar that helps a child organize their day. They can help with movement, communication, reading, writing, speech, organization, and hearing – or just help with managing daily life.
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 hand out to staring strangers, or they are prepared to just tell them what life is like with their child. Sometimes, it’s even okay to just be rude back. Visit Navigating Daily Life for more tips and suggestions.
When we are constantly in the role of caregiver, it is easy to neglect ourselves. By taking care of ourselves first (hard to do but super important), we will be better able to take care of our family. It helps to recharge our batteries every day, even for just 5 minutes, so we don’t feel as tired and run-down. Visit Self-Care for more tips.
Respite care – or a break from your usual time taking care of your child – is especially important when you’re the main caregiver of a child with a disability or special health-care needs.
Connect with other parents about ways they have found good caregivers. See if your child’s teacher or a teacher’s aid is available to help. They already know your child’s needs and behaviors. The Take Time Texas Inventory of Respite Services is a searchable list of licensed respite providers.
Connect with other parents for recommendations. Once your child is at least 3 years old, you might be eligible for your school district’s Preschool Program for Children with Disabilities (PPCD). Visit the Search Texas Child Care page at the Texas Department of Family and Protective Services (DFPS) website for licensed day care centers. Visit our Day Care page for more tips.
The Americans with Disabilities Act (ADA) requires day care centers to try and include children with disabilities. This means that you have every right to ask any center to meet the unique needs of your child, but also know that there are limits to what the center has to do under the law.