Evidence A Gift from Heaven is Needed in Our Community

+ According to National Institute of Health (NIH), 1 in 5 households care for a child with special health care needs

+ According to the Evangelical Free Church of America, over 80% of churches in the U.S. lack a special needs ministry. Children with special needs likely never attend worship services, and more than half of special needs parents reported that their child with a disability had been excluded at church.

----- According to Luke14Exchange, only 5 to 10% of the world’s disabled are effectively reached with the gospel, making the disability community one of the largest unreached – some say under-reached.

+ Although A Gift from Heaven Connection warmly welcomes all families with special needs, our personal journey has centered around navigating challenges of profound autism.

+ Statistics related to autism spectrum disorder (ASD) and profound autism

In 2022, about 1 in 31 (3.2%) children aged 8 years had been identified with autism spectrum disorder (ASD) according to estimates from the Centers for Disease Control and Prevention (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network. This increased from 1 in 68 in 2010 and 1 in 150 in the year 2000.
In 2023, CDC reported 26.7 percent of people with autism spectrum disorder (ASD) have profound autism. It was the first time this statistic has been reported using CDC-collected data and reflects a growing awareness that “profound autism” is different from the broader “autism spectrum disorder.”

<><> Criteria for Profound Autism

* Are at least 8 years old

* Need constant supervision to stay safe and healthy

* Need help with daily activities like dressing, bathing or eating

* May have little or no spoken language

* May also have an intellectual disability

<><> Per Autism Speaks Website, despite having the most significant needs, people with profound autism and their families often face the biggest gaps in support.

+ Self-injurious behavior (SIB) is one of the most devastating behaviors exhibited by individuals with intellectual disabilities. SIB often leads to some form of tissue damage, such as redness, bruises, lacerations, and, in severe cases, bone fractures

----- According to a published article by National Institute of Health (NIH), Self-injurious behavior (SIB) is a significant concern for children and adolescents with Autism Spectrum Disorder (ASD) and is defined as non-accidental self-inflicted acts causing damage to or destruction of body tissue and carried out without suicidal ideation or intent. An estimated 15–50% of individuals with ASD exhibit some form of SIB.

----- According to Autism Research Institute’s Diagnostic Checklist Database, approximately 59% of individuals with autism engage in self-injury, aggression, and/or destructiveness at some point in their lifetime. A follow-up study by Laverty et al. found that 44% of children diagnosed with autism engaging in self-injurious behaviors exhibited the same behaviors a decade later (Laverty et al, 2020). Due to larger body size and strength, these persistent behaviors can become more severe with age and impact the quality of life for individuals and their caretakers or parents.

+ Financial Burdens - Autism Speaks estimated it can cost between $1.4 million and $2.4 million to raise a child with a disability over a lifetime. According to US News, in 2025 it could cost anywhere from $241,106 to $513,722 to raise a child without disabilities until the age of 18.

----- Often families with special needs children are one income households.Due to significant needs, many children with disabilities are unable to go to a daycare or have someone other than a parent provide care.Even when they go to school, parents find themselves having to frequently pick them up unexpectedly.Time is needed for therapies, assessments, and days the child is too unwell to leave the house.

----- There are costs for medical equipment, such as wheelchairs and communication devices

----- There are specialized costs for sensory tools, special diets, and replacing items that get broken due to behavioral needs.

----- There are travel costs to appointments, therapies, private schools that are farther away

----- Vitamins, Holistic Care, or anything that can possibly help them in any way!

+ Our Personal Struggles/Story:

Sydney is nonverbal and has significant self-injurious behaviors. As noted under the inspiration section, we were no longer able to attend our previous church due to them not having a special needs ministry/accommodations for her as she got older. She attended a private school for children with special needs as her home district could not accommodate her behaviors. In her third year of preschool, we requested she move from The Picture Exchange Communication System (PECS) to an Augmentative and Alternative Communication device but were told she was not ready. We purchased an iPad and the program ourselves, checking the history in the evenings to ensure the school was using the program at our request, which was often inconsistent. We tried various outpatient therapy centers but ultimately stopped after a speech therapist informed us that Sydney had plateaued. While we received Behavioral Health Rehabilitative Services (BHRS) when Sydney was young, due to a high demand and limited staff available, we were given minimum hours of services and even those were unfulfilled. When our request for Applied Behavior Analysis (ABA) could not be fulfilled, we paid out of pocket for private services, but eventually returned to BHRS, only to discontinue services when they could not provide a TSS for her. Sydney's SIB's have caused permanent damage to her facial structure; made it hard for anyone to watch her alone other than her father (which caused us to become a one income household), and to break numerous household items. We went doctor to doctor asking for help as we believed some of the SIB was due to internal pain. After being told over and over again, they did not treat autism, three years ago, she suddenly became in extreme pain and had orange urine. After hours in the Children's ER with staff trying to diagnose her with a bladder infection, she was eventually diagnosed with pancreatitis and gallstones with one blocking the common bile duct. Since the gallbladder removal, her SIB's have improved. She communicates using her communication device (on her terms!), which we learned to program and teach ourselves. She currently attends 3.5 hours a day of school in our home district, and since educators have seen her abilities, they have been wonderful in supporting her progress.