The United States Department of Agriculture has several online resources to help kids understand how to stay active, healthy, and positive at their most critical stages of development.
Recipes and information about local Florida crops. The site also has a list of farmer’s markets and festivals throughout Florida.
SNAP provides nutrition benefits to supplement the food budget of needy families so they can purchase healthy food and move towards self-sufficiency.
The SUNCAP Program is a special Food Assistance Program for individuals who receive Supplemental Security Income (SSI). You may be eligible to receive food assistance benefits through the SUNCAP Program without any additional application, paperwork, or interviews. If you already receive food assistance benefits in the regular Food Assistance Program, you may be automatically put in the SUNCAP Program when you become SSI eligible. If your food assistance benefits will go down because of SUNCAP, you may choose to continue receiving your food assistance benefits under the regular Food Assistance Program.
The Special Supplemental Nutrition Program for Women, Infants, and Children, also known as WIC, is a federally funded program which provides the following at no cost to the participant: healthy foods, nutrition education, breastfeeding counseling and support and referrals for health care. This program can provide prescription formulas as well as vouchers for over-the-counter formulas, if your child needs it. WIC also has a program that provides vouchers to be used at the local farmer’s markets in season.
Keeping Track of Your Child’s Illness
It is important to keep track of your child’s symptoms. There are different ways to do this. Some of us write things down in a notebook, type them into a computer document, or use a smartphone app. Remember to take these notes to your child’s doctor visits.
It is also important to keep track of everything that needs to be done. This includes medications, home therapy routines, exercise, and going to medical appointments. Different systems work for different families. For some, it’s a big calendar on the wall. For others, it’s a special app on their phone. Here’s a free one – Medisafe pill tracker. Find what works best for you and your family and stick to it.
Sometimes, you may have problems getting everything done that needs to be done. Maybe your child refuses to cooperate. Try letting them watch TV during their treatments. Maybe both parents must work, and the daycare or school can’t keep up the routine. If you really can’t keep up with the recommended schedule, talk to the healthcare team for suggestions. Be honest and ask for help. They want you to succeed!
Your child may need to visit a therapist for a variety of reasons. Some of the most common therapies include:
Pediatric physical therapists (PTs) work with children and their families to assist each child in reaching their maximum potential to function independently and to promote active participation in home, school, and community environments.
Everyone has occupations—from the toddler whose occupations are playing and learning to the older child whose occupations are being a student and developing the skills to become more independent. Occupational therapy supports children of all ages—newborns to teenagers—by incorporating the occupations that are important to you and your child into the intervention process, whether it is at school, during rehabilitation, or at a medical facility.
A speech therapist is a health professional trained to assess and treat many communication problems in children, including, speech, language, social communication, as well as swallowing disorders.
A respiratory therapist is a health professional trained to evaluate and treat people who have breathing problems or other lung disorders.
Applied behavior therapy and play therapy are both used for children. Treatment involves teaching children different methods of responding to situations more positively. Children with autism and ADHD often benefit from behavioral therapy.
Schools and Education
When we are not dealing with our child’s illness, we want them to get an education. Sometimes this can be challenging. Here are some resources that will help you work with your child’s school to get the services your child needs to be successful.
If your child has special health needs, the school should have a written document outlining a health care and emergency plan.
ELCAC provides early learning opportunities for children from birth to five years old making sure that children will begin school ready to learn. The Coalition’s goal is to make certain that all young children living in our community receive the care and learning opportunities they need to succeed in school and later in life.
UF College of Medicine Department of Pediatrics North Central Early Steps (UF NCES) empowering families, one child at a time. This program helps identify and provide support to young children between birth and three years old. It is geared for children who may have or at risk for a development delay. NCES serves the following counties: Alachua, Columbia, Dixie, Gilchrist, Hamilton, Lafayette, Levy, Marion, Suwannee, and Union.
A homebound or hospitalized student is a student who has a medically diagnosed physical or psychiatric condition which is acute or catastrophic in nature, or a chronic illness, or a repeated intermittent illness due to a persisting medical problem and that confines the student to home or hospital, and restricts activities for an extended period of time.
IFSP and IEP
An Individual Family Service Plan (IFSP) is a plan for special services for young children with developmental delays. An IFSP only applies to children from birth to three years of age. Once a child turns 3 years old, an Individualized Education Program (IEP) is put into place.
Family and Parenting
Parenting a child with special health care needs
Even the best parents are challenged when they are dealing with medical issues on top of all the usual parenting issues. Try to keep your child’s family life as normal as possible.
Caring for Yourself and Your Relationship
If you don’t take care of yourself, you can’t take care of your child. Find at least 15-20 minutes a day to do something for yourself. This is particularly important if you are a single parent. There are many ways to take time for yourself: talk to family members, friends or clergy; walk, jog, or another physical activity; or hobbies. It may feel impossible to find the time to do any of these, but it will help you and your child over the long run. Find ways to talk to other parents (support groups, online).
If you are married or in a relationship, plan a date night once a month, or even a date lunch, if that’s all you can manage. Take time for each other. Work as a team.
Coping with Stress
It is best to deal with the stress as it comes up. Every family copes with stress in its own way. Some parents have found these things helpful: spirituality, yoga, meditation, write in a journal, exercise, or music. If you feel overwhelmed, talk to the healthcare team or find a professional counselor.
It is often empowering for a patient or family member to read about the experiences and knowledge of other patients and families navigating the medical system. These sites offer the collective accounts of many, and serve to help other families through this journey.
In this article, you will learn simple stress management tips and relaxation exercises that have proven useful to all adults. Taking a moment to consider which stress management tools will work for you and putting them into practice will help to provide the stress management approach you’re looking for and the stress relief you deserve.
Real People. Real Stories. Stories of adults and children with special healthcare needs that can inspire and help improve the lives of others.
Free monthly online magazine written by parents of children with special healthcare needs to provide medical information and personal experience in ways other parents understand.
If you have other children, make time for their needs too. Make time for fun and normal family activities. It’s easy to become consumed with caring for a sick child. If they have after-school activities, call upon family and friends to help with transportation. Try to involve the siblings in the care of the child with CF, if possible. Teach them about the disease and about how important it is to keep up with the routine. Find a task that is at their skill level and put them in charge of it. This is a family affair. Teamwork will make everyone’s day easier and will help the family learn to together.
Parents are not the only ones who must adjust to a child’s illness or disability. Life changes for the entire family.
Caring for a seriously ill child takes a tremendous toll on the whole family, and healthy siblings are no exception. As parents, our exhaustion, stress, and uncertainty about how to respond to the needs of other kids can leave us feeling guilty and drain our reserves — and might tempt us to downplay or ignore the impact a child’s illness may have on his or her brothers and sisters.
Each child has his or her own concerns when a brother or sister is in the hospital. Here you’ll find information to help you understand the reactions children may have and some ways to help them cope during this time.
Local Family Resources
a resource of all the fun things to do with children in Gainesville and Alachua County. The person who mediates the site is very sensitive to children with special health care needs and frequently includes activities for these special kids
Teaching children ages 3 and over for water safety, learning how to swim and all 4 stroke techniques.
A brand-new indoor pool complex in Alachua. They have “Dive-in” Movies and Parents Night Out events as well as swim lessons.
Celebration United Methodist Church offers free childcare every other month for families that have children with special health care needs. Our hope is to provide a safe place for the children to come and have fun while their parents/guardians get a time to renew themselves and their relationship
There’s a Special Need for Your Heart
Choosing to foster or adopt a child in foster care with special needs can be an emotional time. In addition to feelings of excitement and pride, there can be nervousness and uncertainty about how it will all work out. There is help for families who have made the commitment to foster or adopt a child in foster care with special needs. There are many types of support available to foster parents, especially those who open their homes to children with special needs. Help includes specialized training to help you meet the needs of the child, counseling, foster parent support groups, and online training to help with many other special needs topics.
Help for Families in Need
If you need help finding affordable housing, the following organizations may be able to help.
- Alachua County Housing Authority: (352) 372-2549
- Gainesville Housing: (352) 381-3707
The Alachua County Organization for Rural Needs, Inc. (ACORN) Clinic is a nationally-recognized program that provides low-cost medical, dental, and social services care to residents of North Central Florida.
The mission of Catholic Charities is to provide services to anyone in need, regardless of race or religion; to advocate justice, human dignity, and quality of life; and to call all people to join in these efforts.
Formerly Interfaith Hospitality Network of Greater Gainesville (IHN) is a nonprofit organization created to provide shelter and comprehensive support for homeless families with children.
For over 40 years, Gainesville Community Ministry (GCM) has provided emergency help and hope to families and individuals who are in crisis and lack the basic necessities of life.
HealthStreet is a community engagement program at the University of Florida that aims to improve the health of our community by bridging gaps in healthcare and health research.
Our mission is to empower families with children to transition from homelessness to self-sufficiency by providing case management, housing, food, training and educational resources in a secure environment.
SWAG is a community-based organization that strives to improve the living conditions, educational opportunities, health, and quality of life for residents in the Tower Road corridor, just west of I-75 in the 32607 zip code.
Three Rivers Legal Services, Inc. is a non-profit law firm with law offices in Gainesville, Jacksonville and Lake City, Florida, dedicated to the provision of quality legal assistance to the poor, abused, disabled and elderly, and to empowerment through preventive legal education. TRLS provides free civil legal assistance to low income families in seventeen counties.
Our aim is to reach out to neighborhoods in Alachua County suffering health disparities and offer primary care to individuals in these communities.