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.
It’s important to remember that their grief, however expressed, is powerful and part of the healing process. Assure your child that the death is not their fault. Make a memory box to honor the deceased, letting your child pick things to go in it. Look at photographs of the person (or pet) who died and share memories, if possible. Show your child any sympathy cards too. Visit Major Life Events for more ideas.
Major life events – both expected and unexpected, exciting, and upsetting – can be overwhelming. Reassure your child that your love for them has not changed. Help your children express their feelings. Keep a routine. And pay attention to your child’s mental health.
High school is an important time for your teenager, because they might be considering what kind of adult life they want for themselves. You can help your child take on new responsibilities and be more independent by asking them about their priorities each morning and helping them focus on these things.
Also, help your child to get involved in their own Admission, Review, and Dismissal (ARD) meetings to learn more about taking charge of their education. Encourage your child to ask the doctor questions during visits. Check out the How to Talk to Your Doctor page to learn about involving your child in their health care. Our Medical Transition page can help you learn more about preparing your child to take charge of their own health care.
Help your child understand that puberty happens to everybody and, as strange as they might feel, everything they are experiencing is normal. Discuss body parts honestly and accurately. Use direct language and visuals when you talk to your child about the changes happening to their body. Have these conversations as often as needed while repeating the important facts, so your child can make sense of it all. Visit our Puberty and Sexuality page for more tips.
Teenagers with disabilities and special health-care needs have the same urges and sexual feelings as other people. It might be difficult to have these conversations but it’s important. Stay calm and discuss appropriate behaviors and privacy with your child. Your child should know that they have the right to leave a situation that makes them uncomfortable. Visit our Puberty and Sexuality page for more tips.
Setting up wills and trusts ensures that your child can keep qualifying for federal and state benefits. It is important that your will states that any money or property you want to give your child goes directly into the trust. It is also important to set up your life insurance or retirement policies to pay into that trust rather than directly to your child. If you don’t need to set up a trust for your child during your lifetime, you can set up your will so that one is created at the end of your life.
In general, a trust is a legal way to manage money and property for someone else. A Special Needs Trust, sometimes also called a Supplemental Trust, is a way to store an unlimited amount of money or property for a person with a disability or special health-care needs without affecting their federal and state benefits. Visit Wills and Trusts for more tips.
A Letter of Intent (LOI) is a living document that describes your child’s needs, wants, dreams, and everyday care. The contents of the LOI are useful for your child’s caregivers and teachers. It also helps you explain your child’s needs in school meetings or doctor’s visits. It helps to properly direct their overall care, if you aren’t around to oversee things. When you combine an LOI with your other legal documents, as well as a will and a special needs trust, you have a set of tools to make sure your child is taken care of, even if you aren’t around or able to.
A power of attorney is a document that allows 1 person to legally take care of important matters for another person without needing to go to court – like signing documents, managing money or making medical decisions for the person. You can find sample power-of-attorney documents online, or get one from a lawyer. The power of attorney might be helpful if you are unavailable, and someone else needs to take care of your child. Find out about types of powers of attorney and more on our Legal Tools page.
The Exceptional Family Member Program (EFMP) is designed to help children in military families who have unique medical or educational needs. Members of the military must sign up for EFMP if they have a child with a disability or special health-care needs.
TRICARE is the health insurance program for all military families. Some children in military families may be able to get the TRICARE
Extended Health Care Option (ECHO). ECHO gives financial help to families of children who have disabilities or special health-care needs and need care that is not typically covered under TRICARE.
See our Resources for Military Families of Children with Disabilities page to learn more about these and other programs.
When you are up for a new assignment, talk to your EFMP case manager immediately. Talk about your child’s needs and the services that may or may not be available in the new location.
Do your own research too about services in the new location. EFMP can’t be as much of an expert as you are on your child’s needs – like if their recommended service provider really is the best fit or has a waitlist.
See our Resources for Military Families of Children with Disabilities page to get more suggestions for researching a new assignment or managing a move.