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.
It’s important to start working with the school early to get needed protections. Your child may need new or different special education services or 504 accommodations, and these can make a big difference. Or they might find new interests and friends in a school or community program that would give extra support. See Risky Behavior – When and How to Respond for some suggestions we’ve collected from other parents and professionals and Section 504 for more about accommodations.
Not every risky behavior is going to get your child involved with the law or the juvenile justice system. But if you’re concerned, it’s good to act early to get them some help. Help could come from a counselor or therapist, their school, or a youth support program (sometimes called “at-risk youth programs” or “juvenile justice prevention programs”). Learn where to get help on Risky Behavior – When and How to Respond.
Once your child is involved in the juvenile justice system, the process of what happens is slightly different for each child. Each county in Texas runs its own juvenile court and probation system. A judge will decide whether your child is released to your custody or held in a facility based on a number of things, including:
To learn more about the process, see our page on navigating the juvenile justice system process.
A GO kit has all the things that your child or family has to have if you are in an emergency situation. It should include a weeklong supply of the things your child needs to live and thrive that aren’t easy to get off the shelf at a drug or grocery store. Consider that some supplies and medications might be hard to get during a natural disaster or emergency.
For tips on setting up a GO kit, visit our Emergency Preparedness for Families of Children with Disabilities page.
If you make a plan and take steps to be prepared, you can reduce the impact an emergency or natural disaster has on your family and your child. And, as you probably already know, being prepared can be a lifesaver for children with disabilities or special health care needs. Find tips on preparing for an emergency on our Emergency Preparedness for Families of Children with Disabilities page, and see an [EMS professional’s perspective](link to: A Professional’s Perspective on Emergency Preparedness for Children with Disabilities).