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Navigate Life Texas: Resources for kids with disabilities and special needs
Navigate Life Texas: Resources for kids with disabilities and special needs
After your child gets a failure to thrive diagnosis, you and your child’s doctor usually make a plan. The doctor might want to talk to you about your child’s eating. They might do some tests to see how your child’s body manages food. The doctor might recommend adding formula if you’re breastfeeding. Because there are so many different reasons for failure to thrive, every family’s plan is different. Usually, it’s a process of trying different things, and staying in touch with your child’s doctor. See our page on Eating Challenges for more tips.
There is no one way to solve eating challenges. Just like children grow and change over time, so does their eating. The parents we talked to had all been frustrated and scared at some point. They also shared a lot of things they learned along the way that helped or gave them hope. See our page on Eating Challenges for more tips.
Some children just can’t allow anything inside their mouths. This is called oral defensiveness. While it might seem like something they’re doing on purpose, it’s not. For these children, eating and brushing teeth can seem very painful. See our Oral Health Tips and Strategies for ideas on helping a child with oral defensiveness.
A toothache is known to be one of the worst forms of pain. If your child has a toothache and has to have teeth removed because of it, they can have a harder time eating, sleeping, talking, or even using their face to show feelings.
Your child’s mouth can also protect them from some of the bacteria, viruses, or toxins that come from eating, drinking, and breathing. When your child’s gums and teeth are healthy, your child has a lower risk of getting sick. See Oral Health Tips and Strategies for ideas on boosting your child’s oral health.
Most parents we’ve talked to agree that the moment they heard a diagnosis for their child was an unforgettable one. Our Personal Stories About Receiving a Diagnosis for Your Child page shows the different ways that parents reacted in the moment and how they managed to move forward with their child’s care. We hope that these stories help you know you’re not alone, no matter your experience.
If you suspect that something is different, it’s important to do 2 things: Look at developmental milestones so you know what typically developing children look like and talk with your child’s doctor as early as possible.
If your child doesn’t have a diagnosis, keep seeing your child’s regular doctor. Look for university or medical center research groups that might be working to understand your child’s condition or specific symptoms. Connect with other parents or emotional support and education. Keep doing your own research too. Visit the When Your Child Has a Rare Condition, Multiple Diagnoses, or Is Undiagnosed page for more tips.
The need for a name to put around your child’s symptoms is important. It helps you access services. It helps you connect with other parents who are in similar situations. It helps you learn what you can do to support your child for the best possible life. Visit the When Your Child Has a Rare Condition, Multiple Diagnoses, or Is Undiagnosed page for more tips.
You might be worried about a friend or loved one’s child. If you suspect that something is different, think 3 or 4 times before you say anything. Respect the parents’ privacy and emotions. Speak from personal experience if you have any to offer. Understand that the parents might not be ready to act on what you tell them today. Try not to overwhelm them. But show your positive love for their child.
If your child is an infant or toddler, it is very important to ask for Early Childhood Intervention (ECI) services. Do not delay; ask for your child to be evaluated for these services.
At any age, work to understand your child’s diagnosis. Create a vision and plan for your child. Create a care notebook to keep your child’s medical records organized and in one place. Our Organizing Medical Records page can help you learn more about creating a care notebook. Connect with other parents might be going through the same thing you are. And take care of yourself and your family.
See more on our My Child Has a Diagnosis. Where Do I Start? page.
Talking to your child’s doctor can take practice. Doctors and their office staff should listen carefully when you and your child express needs and preferences. They should answer both of your questions in a patient, kind, and easy-to-understand way. They should do their best to make you and your child comfortable. They should treat your child respectfully, as a person with unique needs. Learn more on our How to Talk to Your Doctor page.
Try to schedule your visit at a good time for your child. Ask for extra time before you go to the visit. Bring snacks, toys, books, or games to keep your child occupied. Try to act out the doctor’s visit with your child before you go. Ask your doctor’s office to prepare a special waiting room or quiet area, if your child needs it. See more tips on our How to Talk to Your Doctor page.
A medical home is a type of relationship with your child’s medical team. In a medical home, one central contact coordinates care for your child with a disability or special health care needs. The medical home team works with your child and family to make sure all medical and non-medical needs – including educational services, family support, and out-of-home care – are met.
Children with disabilities or special health care needs often see many doctors and specialists. Having all of that care coordinated through 1 main contact will make your life and your child’s life easier. Your child’s medical home can help connect your family to support groups, parent-to-parent groups, wellness programs, and other community services and supports.
We’ve heard that many parents find a care notebook to be the best way of keeping everything organized. Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and members of their school or care team would need to know about your child. Learn more on our Organizing Medical Records page.
Make a list of the things you refer to most about your child, such as reports from their doctors, lab results, vaccine records, care plans, hospital stays, school records, etc. Decide how you want to organize it. Some parents use a 3-ring binder, while others prefer a virtual care notebook on their laptop, tablet, or smartphone. Learn more on our Organizing Medical Records page.
Businesses that sell durable medical equipment and supplies are called DME providers. They will also handle your insurance claims. If you have an insurance or Medicaid case manager, ask for their help to find an in-network DME provider. Connect with other parents or get recommendations from your doctor or therapist to find a DME provider.
Medicaid plans and other health insurance cover some or most of the cost of durable medical equipment and supplies if they have been prescribed by a doctor and deemed medically necessary.
It’s important to find a dentist who respects your child’s differences – and one who understands sensory issues, anxiety disorders, or other unique concerns. Connect with other parents to get the names and numbers of dentists they’d recommend. Check out dentists who specialize in pediatric care. Look at a support group online for your child’s specific disability to see if anyone has recommended dentists or creative ideas for when you visit the dentist. See our Dental Care page for more tips.
Thinking out of the box helps establish trust between your dentist and child. When a visit is getting too long, for example, a dentist might be willing to split a routine checkup into 2 different visits. Write a brief letter about your child’s diagnosis, what you or your child is doing to take care of their teeth at home, and any struggles you have. Ask ahead of time for a private room, extra time with the dentist, and extra staff for a teeth cleaning. If your child is already going to have anesthesia for 1 treatment, consider combining many things at the same time. Maybe a cleaning, X-rays, fluoride, and stain removal all at once. See our Dental Care page for more tips.
Early Childhood Intervention (ECI) is a statewide program for children with disabilities and developmental delays from birth to 3 years old. It supports families like yours. Support services can include case management and specialized skills training; deaf education and vision services; physical, occupational, and speech therapy; nursing and nutrition services; or social work and counseling services.
If you suspect problems with your child’s abilities and growth, don’t delay calling Early Childhood Intervention (ECI). This is not a time to wait and see. As a parent, you can make a referral yourself – call ECI and see what they can do to help. When you call, staff will explain ECI services, talk with you about your concerns, and answer any questions that are important to you. Together you can decide if you want to continue with ECI and get your child evaluated.
Using an Electronic Health Record (EHR) gives your child’s doctor a way to keep track of your child’s patient record and treatment notes electronically and securely. Some doctors can give you access to parts of your child's EHR through patient websites. EHRs and patient websites allow you and your child’s doctors to work together to coordinate your child’s health care.
Many doctor’s offices and insurance companies are starting to have web or mobile apps so that you can make appointments, get lab results, or look at your child’s health information from your laptop or smartphone.
The term "mild brain injury" is misleading. Concussions and other mild brain injuries in children are always something to take seriously. While most children who have a concussion or other mild brain injury recover with rest, there is always a risk of brain damage and disability if they do not get proper care and follow the doctor’s treatment plan. Learn more on our Traumatic or Acquired Brain Injury in Children page.
Some signs or symptoms of a brain injury might show up right away, while others might not show up for hours, days, weeks, or even months. If you suspect your child has had a brain injury, call 9-1-1 or take them to the emergency room right away. If in doubt, call 9-1-1 or ask for a doctor’s opinion.
See Traumatic or Acquired Brain Injury in Children for a list of symptoms of a brain injury.