On the Front Line of Special Needs

Ellie participating in teletherapy services from her speech therapist Kasie Birdwell from ACCESS School.

When our daughter was born we were expecting Down syndrome and heart defects, but as time went on, we learned more about her and global delays, hypothyroidism, ear and eye concerns and lung disease.

After telling her nurse that I didn’t want anyone else to come in our room because I couldn’t handle another diagnosis, she gently told me that we should get comfortable with the hospital because there would be a lot of appointments for the rest of Ellie’s life.

Common Health Care Pros Serving Kids with Special Needs

As a parent of a child with special needs, knowing what role each person plays in my child’s life is important so we can work together towards success. A lot of kids with disabilities are also medically fragile and require doctors and specialists including:

• pediatricians for monitoring development and health, plus managing referrals and therapy evaluations
• cardiologists for heart defects
• otolaryngologists for ears, nose and throat
• audiologists for hearing loss
• ophthalmologists for eye issues
• gastroenterologists for digestive issues
• nephrologists for kidney disorders
• pulmonologists for lungs and breathing support or devices
• endocrinologists for thyroid, diabetes and obesity
• geneticists for autism, birth defects, developmental delays, inherited conditions and metabolic disorders
• registered dietitians for diet regulations
• physical therapists for strength building and pain management
• speech therapists for swallowing, eating and speech support
• occupational therapists for life skills and more

Ellie’s Village

The nurse was right. Ellie has a team of specialists who are her cheerleaders and our village. It takes each of them to give her the best shot at staying healthy and happy. While it was overwhelming at first, I now find the doctor’s visits and therapy evaluations comforting. The more we learn, the easier it is to help her.

Like a machine, each of the parts work together to ensure that we are empowered to help Ellie. Without her physical therapist, her muscles wouldn’t be strong enough to support sitting which helps keep her airways open and the digestive system moving. If we did not meet her daily fluid and calorie requirements from the Registered Dietitian, it could affect her weight and medicine dosage which would be of concern to her cardiologist.

If you think your child could benefit from a visit with a specialist, talk to your pediatrician about how to make an appointment.

Originally published in July 2020 issue of Little Rock Family.

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