Health Condition and Disability-Specific Resources
Fathering a Deaf or Hard-of-Hearing Child: An Onboarding Checklist for Dads
The Early Hearing Detection and Intervention (EHDI) Parent to Parent Committee developed a checklist written by fathers of children who are deaf or hard of hearing (D/HH) for dads or anyone who feels they fulfill this role in a child’s life.
“Fathering a Deaf or Hard-of-Hearing Child: An Onboarding Checklist for Dads” provides information and action steps to support and encourage fathers to take an active role in every aspect of their child’s life from the start. The guide shares information from a dad’s perspective on topics including:
- The ” new dad” learning curve
- Language and communication
- School and legal rights
- Well-being
Feeding Tube Information from Lurie Children’s Hospital
Ann and Robert H. Lurie Children’s Hospital of Chicago provides this video on “The Basics of Caring for a Child With Feeding Tubes.” Lurie also provides the parent guide, “Supporting Nutrition: Understanding Tube Feeding.” The reference guide includes personal stories and information on:
- Administering feedings through the feeding tube
- Changing the dressings and cleaning around the tube
- Problems that may occur with the gastrostomy tube or the insertion site
Lurie’s website also offers tube-feeding resources for children and adults with cystic fibrosis and an overview of the types of feeding tubes for children.
Please note this information is not a substitute for the medical care and advice of your physician. There may be individual circumstances in your child’s healthcare that cause a variation in treatment.
Finding Help for Young Children With Disabilities and Developmental Delays
Every child is unique, and some children face extra physical or learning challenges. Parents often have questions about sources of information and support. This Finding Help for Young Children With Disabilities and Developmental Delays resource list from the Illinois Early Learning Project shares information for parents on how to get your child evaluated, how to get special education services for your child and where to find more information to support children with autism, Down syndrome, hearing loss and vision loss.
flok for Individuals with an Inherited Metabolic Disorder
Formerly known as PKU News, flok provides resources, research, support and an app for individuals with an inherited metabolic disorder and the people and clinicians who care for them. These conditions include Classical Homocystinuria (HCU), Maple Syrup Urine Disease (MSUD), Phenylketonuria (PKU), Tyrosinemia and more.
The flok website includes:
- Opportunities to connect and share in person and virtually
- Annual flok Family Camps
- Food science information guided by a staff dietitian and collaborations with partner organizations and Genetic Metabolic Dietitians International
- The flok app for individuals managing an inherited disorder of protein metabolism
For questions, please contact flok at info@flok.org or (973) 619-9160.
Flying Horse Farms Camp for Families and Children with Serious Illnesses
Flying Horse Farms (FHF) is a free medical specialty camp for children and young adults ages 7 to 21 with complex medical conditions and their families. Located in Mt. Gilead, Ohio, FHF offers fun, transformative overnight and family camping experiences to campers across the United States. There is no cost to attend camp sessions. Lodging and meals are also provided.
Camps are available for children and young adults with diagnoses and conditions that include:
- Heart and lung conditions
- Rheumatologic diagnoses
- Craniofacial diagnoses
- Blood disorders
- Gastrointestinal disorders
- Spinal cord diagnoses
- Mental health conditions
See the Flying Horse Farms camp schedule.
For questions, please contact Flying Horse Farms at (419) 751-7077 or info@flyinghorsefarms.org.
Foundation for Hearing and Speech Resources
The Foundation for Hearing and Speech Resources (FHSR) is a private, non-profit, grassroots organization dedicated to improving the quality of life for all children affected by hearing and communication disorders.
Parent resources and programming include:
- Facts about Hearing Loss
- Ages and Stages
- Clinical and Community Outreach
- Music programming
- Music scholarships in the Chicagoland area
Free American Sign Language Classes at Moraine Valley Community College in Palos Hills
Moraine Valley Community College (MVCC) offers free American Sign Language (ASL) classes for families who have children ages birth through high school who are deaf or hard of hearing. Deaf instructors teach the classes in sign language and written English. MVCC serves residents in Moraine Valley and Cook County.
To register for the classes and get more details, email ASL@morainevalley.edu.
Friends of Man is a non-profit that uses 100% of donations for charitable assistance. The charity receives applications requesting mobility equipment, prosthetics, home modifications, medical equipment, hearing aids, basic needs and much more from referring professionals. Referring professionals include caseworkers, case managers, healthcare workers, social workers, school counselors, teachers and clergy who apply on behalf of their patients and clients.
In addition to the assistance listed above, Friends of Man can provide assistance nationwide for adaptive equipment, assistive technology, lift chairs, mobility equipment, orthopedic braces and shoes, stairlifts, vehicle adaptations and wheelchair ramps.
More details are on the Friends of Man Eligibility page.
G-Tube Notebook Videos from Children’s Wisconsin
Children’s Wisconsin’s G-tube Notebook videos offer information and step-by-step help for taking care of a child’s feeding tube. The videos include an introduction to understanding feeding tubes as well as videos specific to caring for and changing tubes in English and Spanish.
Children’s Wisconsin’s PEG tube video provides information and demonstrations on what to expect after the tube is placed, including:
- Care after surgery and helping the site heal
- Types of PEG tubes
- Tips for caring for and stabilizing the tube
- Primary tube change
- Common problems
Generation Patient is a nonprofit organization created by and for young adult patients with chronic, complex, rare or undiagnosed medical conditions. The organization’s focus includes providing peer-support groups, roundtable discussions and helping to drive systems-level change through policy work, leadership programming and advocacy initiatives across healthcare and research spaces.
Generation Patient also offers:
- “Creating Spaces for Young Adults with Chronic Conditions,” a step-by-step toolkit with resources and strategies for finding and creating peer support
- Virtual community-led peer-support groups for young adults (ages 18 and up), including:
- A general group for young adults with chronic and rare medical conditions,
- A support network and resources for students with disabilities,
- A higher education group for patients in college or graduate school,
- A group for young adults with irritable bowel disease (IBD)