Raising 13-year-old girls can be challenging. They are no longer little girls because they are turning into young ladies. They want to be loved and supported, respected for their feelings and opinions, and, most importantly, have the space to be independent. Raising a 13-year-old girl with special needs is challenging and requires a particular style of care and additional attention. Jacie McDougald is no different from other 13-year-old girls that seek support and respect; however, the journey to Jacie’s independence and continuous maintenance of her independence is quite different from the average young lady.
Jacie’s mother, Wendy McDougald, knew her daughter would be born with Spina Bifida, a development of the spinal cord and surrounding vertebrae that leaves a gap or split in the spine. And with Spina Bifida, the addition of Hydrocephalus, structural abnormalities in brain parts that develop before birth prevent proper cerebrospinal fluid drainage. Thus, increasing pressure and compressing the brain further.
Yet, McDougald said Jacie’s diagnosis does not define their lives, and “her independence is our primary focus.”
“Whenever I wrote letters expressing our needs, it was to help the family with Jacie’s condition,” McDougald said. “But a large part is to help Jacie be more independent and do her own thing.”
Jacie’s daily functionality equipment and supplies would be sparse and financially strain the family if it had not been for Northeast Delta Human Services Authority’s (NEDHSA) programs offered through the Office for Citizens with Developmental Disabilities (OCDD).
McDougald said that people do not understand. They think that because she and her husband make a decent income, the financial strain doesn’t matter. As a result, people tend to overlook that Jacie has unique and special needs.
“No matter how much money you make or don’t make,” McDougald said, “there is still the extra expense.”
Having a child with standard care is expensive. When you have a child with special needs, it’s standard care plus additional costs.
Like many, McDougald knew resources were available but needed to know what they were and how to make Jacie a recipient. Through an exchange of community networking, McDougald and NEDHSA Community Service Professional Lisa Kelley connected, thus beginning the McDougald and NEDHSA relationship.
“I have been working with the McDougald family for several years,” Kelley said. “It has been a pleasant and rewarding experience helping this family.”
Kelley’s work with the family resulted in the approval of the Flexible Family Fund, allowing Jacie to purchase items she needed and aiding in buying a new wheelchair.
NEDHSA Community Service Professional Annie Patterson assisted in the McDougald family’s determination to provide Jacie with as many opportunities to be independent as possible. In addition, McDougald credits Patterson and NEDHSA for relieving major financial stressors for the family by catering to Jacie’s growing needs, such as financial assistance with home modifications with a ceiling lift system installation. The McDougald family also received assistance for vehicle modifications, such as a side entry conversion for wheelchair access for their newly purchased van.
Having NEDHSA in their corner for the past six years brings an unlimited amount of relief to the McDougald family and ensures Jacie’s growing needs are managed with urgency and care.
“We are very thankful for NEDHSA,” McDougald said.
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