One mom’s insights: Navigating care for children with behavior differences

autism complex care

Diba Jalalzadeh, now 12, paces energetically around the waiting room. She has been coming to Boston Children’s Hospital since she was a baby. Today she is seeing her developmental medicine specialist, Dr. Carolyn Bridgemohan.

But she’s just one of the many specialists Diba sees at Children’s.“We touch on many departments,” says Monir, Diba’s mother.

Diba was diagnosed with Crouzon syndrome when she was 10 months old. She has had several surgeries to manage the effects of her craniofacial syndrome on her skull, eye muscles, tonsils and adenoids. She currently wears a brace on her chest to counter kyphosis (her shoulders’ tendency to cave in).

Though she’s never gotten really sick, Diba is a complex patient. Unrelated to her syndrome, she also meets criteria for autism spectrum disorder, so procedures most kids will put up with can potentially make her very anxious.

Blood pressure measurement? “She doesn’t enjoy that at all, but she tries to get through it.”

Sleep study? “She had a very hard time sleeping through the night but she managed to sleep a little,” says Monir. “If you ask her to do it again, she says, ‘No I can’t even try it!'”

Eye patching for an exam? “I won’t do it.” (She finally agreed to it at the end of the visit.)

Even measuring Diba’s head circumference can be a challenge.

Coping with medical visits

Monir carefully spaces out Diba’s many appointments — both to spare Diba and to be able to fully concentrate on what the doctors are saying. “Sometimes I think of combining appointments like many families do, especially those coming from far away, but I feel for Diba and don’t want her to have three appointments back-to-back,” she says. “I am afraid I might not pay enough attention during that last appointment. You try to write your questions down, but especially when Diba was younger, it was hard to concentrate. You get interrupted a lot.”

Getting things done during ordinary procedures like blood draws and clinic appointments is a give-and-take. Most of Diba’s caregivers — from radiologists to lab technicians — understand that pushing too hard would only traumatize her.

“If Diba feels she can’t do a procedure, then I can’t make her do it,” says Monir. “At Children’s we’re lucky that they give us some extra time, and she eventually does it.”

Understanding anxiety

Most providers also realize that many of Diba’s behaviors come from anxiety. “I always try to explain things to Diba,” Monir says. “I look into her eyes, tell her who we are seeing and say, ‘Listen, this appointment is very important.’ Even if she doesn’t respond, I know she is like a sponge, I know she is listening and that she is better prepared.”autism

Patience is key — toward both child and parent — since a lack of it only adds to the stress.

“It’s hard when you know your child needs to have something done but is acting up, which ultimately makes it difficult to perform the test or procedure,” says Monir. “I feel for the providers. At Boston Children’s, providers understand that if you keep the parents calm and comfortable, they will have a more cooperative child.”

Flexibility and understanding kids with behavioral differences helps make visits easier, says Monir. When oral surgeon Dr. Bonnie Padwa recently removed Diba’s premolars, for example, Dr. Padwa and her team sat with Diba in the operating room, holding her hands, “talking to her like any teenager,” Monir recalls. “They booked her as the final day surgery patient, so they could let her walk all over the pre-op area, which relieved her anxiety.”

Boston Children’s autism-friendly hospital initiative also provides some formal supports, such as social stories (visual narrations explaining what will happen during a medical visit). The Autism Spectrum Center also offers helpers to accompany the child during the visit or meet with the child ahead of time.

Diba hasn’t needed such help so far, but before her sleep study, a Child Life Specialist took her to tour the sleep lab and let Diba touch the electrodes.

Respecting resistance

Sometimes Diba acts out for very good reason — like when she’s feeling pain.

“The hardest part is her not being able to explain what’s going on in her body or mind,” Monir says, “Kids like Diba assume you know what is happening to their bodies. But I’ve learned over the years that I have to trust her anxiety.”

Monir also understands that at some deep level, Diba wants to be a cooperative patient.

“It’s a personal pride and battle,” says Monir. “I’ll say, ‘Diba, we came here to the hospital to do this, and if you really think you can’t do this, we should go home.’ And then she will say, ‘OK, I will try.’ And with a little time and patience she does it. And then she’s so proud of herself that she did it.”

But there will be some procedures Diba won’t be able to do easily. Those are the times her medical team and parents have to make the decision to provide her care in the most acceptable way to her.

“Every time we enter Boston Children’s for an appointment, I am a little nervous but I remind myself, ‘in the midst of uncertainties this place has shown us hope.’ And that is a good reason to try and trust.”

Learn more about the Boston Children’s Autism Spectrum Center.