Helpful strategies to mitigate our child’s haircut anxiety

Before our daughter, Rylae-Ann, received gene therapy when she was just 18 months old, she needed her first haircut to make space for the surgery. Most parents might mark this milestone with a special trip to a children’s salon, a tiny envelope for the first curl, and several dozen photographs. My wife, Judy, chose a more efficient approach: She shaved Rylae-Ann’s head bald.

At the time, Rylae-Ann had very little control over her body and no way to explain how she felt. The only form of resistance available to her was screaming, so she used it enthusiastically. There was no bargaining, running away, or carefully prepared speech about why her hair was perfectly fine. She simply screamed until the haircut was finished.

Rylae-Ann, now 7, was born with aromatic l-amino acid decarboxylase (AADC) deficiency. This rare genetic disorder interferes with the production of important neurotransmitters, including dopamine and serotonin. Before treatment, she experienced severe developmental delays, low muscle tone, movement difficulties, and oculogyric crises, which caused her eyes to become fixed upward for extended periods. Children with AADC deficiency may also experience sleep problems, excessive sweating, drooling, feeding difficulties, and problems regulating their emotions and bodies.

In November 2019, Rylae-Ann received gene therapy through a clinical trial in Taiwan. Her progress afterward was remarkable. She learned to sit, crawl, walk, run, speak, argue, negotiate, and develop extremely strong opinions about her personal appearance. The ability to argue was wonderful progress, though it created new complications when it came time for haircuts.

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Haircuts continued to cause Rylae-Ann considerable anxiety after gene therapy. Over time, that anxiety has greatly decreased, but she still presents several persuasive arguments about why a haircut is unnecessary. When those arguments fail, she may run and hide. When hiding fails, she may refuse to sit still.

Hair care can involve several uncomfortable sensory experiences at once. The scalp is particularly sensitive to touch. A child may dislike the pulling of a comb, the vibration of clippers, the sound of scissors, the smell of hair products, or loose hairs falling across the face and neck. Moving or tilting the head can also be uncomfortable for children with movement or balance sensitivities.

Anxiety may also come from uncertainty. The child may not know how long the haircut will last, whether it will hurt, or what the person holding the scissors intends to do. Running away, arguing, or refusing to cooperate may appear to be misbehavior, but these actions can also be attempts to escape an overwhelming situation.

Other possible issues include a sensitive or irritated scalp, tangled hair, difficulty tolerating water near the face, fear of unfamiliar people, discomfort with the salon cape, or frustration from being expected to remain still. Parents should also look for dandruff, rashes, sores, lice, or other physical causes of pain rather than assuming every reaction is behavioral or sensory.

Preparing for the hair salon

Rylae-Ann wears a hat as a practical compromise when a haircut or another round of combing is not worth the battle. (Photo by Richard E. Poulin III)

Haircuts and grooming are essential. Her active lifestyle and limited eating skills require constant attention. Our most effective strategy has been preparation. About a week before a haircut, we begin telling Rylae-Ann what will happen. Judy uses drama therapy and role-play to help her practice the experience. We review the plan each day, remind her that the haircut will be short, and explain who will be there.

By the time the appointment arrives, Rylae-Ann has already imagined the haircut several times. She may still argue, but she usually gets into the chair with minimal resistance. For our family, that counts as a peaceful appointment.

Haircuts are not frequent, but hair care is required every day. Combing Rylae-Ann’s hair can become a mission, particularly when tangles are involved. She is also a messy eater. Without intervention, part of every meal may become a long-term resident of her hair.

We experiment with hats, wide headbands, soft fabric bands, clips, and hair ties. Rylae-Ann tolerates hats and headbands fairly well. Hair ties are accepted for approximately five minutes before mysteriously appearing on the floor. Judy still has trouble convincing Rylae-Ann to sit and have her hair braided, but that’s a battle not worth fighting.

Other helpful approaches may include using detangling spray, brushing small sections at a time, starting near the ends, allowing the child to choose the brush, using a mirror, offering breaks, or scheduling hair care when the child is calm. A shorter, easy-to-maintain hairstyle can also reduce daily battles.

Rylae-Ann’s hair challenges have not disappeared, but they have become manageable. Progress does not always mean that a difficulty completely vanishes. Sometimes progress means a child can understand what is happening, communicate her worries, and eventually climb into the barber chair. Even if she spends the entire haircut explaining why it was unnecessary.

Note: AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.