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Giving Caregiver Advice for Parents of Rett Syndrome Children

Lisa is the mother of a 22-month old daughter with Rett Syndrome. Her child, like any other, developed normally during the first several months of life. But, by the first year, development had slowed, dramatically. Muscle tone had decreased and eye contact diminished. Over the next few months, further changes occurred.

Doctors confirmed something was wrong. Lisa’s child received a diagnosis of Rett Syndrome.

Just weeks before returning to full time employment, Lisa and her husband were beside themselves. They understood their child’s needs, but didn’t trust the ability of others. How could they find a childcare provider who could adequately care for their daughter? Their daughter’s needs were unique, highly specialized, and could never be ignored.

Like Lisa, parents of Rett Syndrome children battle constant worry when it comes to babysitting and overall childcare. Searching for a professional to care for their child is a cumbersome task. Lisa and her husband were forced to embark on the long and often-difficult journey of finding the right caregiver to watch their daughter. Without information on what to look for in a special needs caregiver, the process is time-consuming and challenging.

Recommended caregiving behaviors for Rett Syndrom Children

Knowing what to look for in a caregiver of a child with Rett Syndrome is critical to the success of finding the right provider. The basics of care are often the tasks we take for granted. But, there is more to caring for a Rett Syndrome child than feeding, bathing, brushing hair and teeth, toileting, dressing, or administering medication. Rett Syndrome care may involve carrying the child, putting on braces to help him or her walk, repositioning the child for comfort, or changing a bib used for drooling.

The caregiver must be physically able to carry out the routine, day-in and day-out. The nanny must be willing and able to handle the physical demands, while not easy. They must be able to keep their wits when the child screams, vomits, or experiences a seizure. In short, the caregiver must a pillar of strength for the child and family.

Parents willing to relinquish control find themselves examining the potential babysitter’s character and ability. To assist the process of finding the right person, below are particular characteristics and caregiving behaviors that should not be ignored.


During the face-to-face meeting, you may decide whether the person is the right one to meet your child. You do not want to cause confusion with your child by having them meet every candidate you interview. But, your child should interact with those caregivers on your final list.

Communication between the candidate and your child is critical. It is an encounter that must take place and be evaluated. This is as important with younger children as it is with older children. Watch the attentiveness of the caregiver, pay attention to his or her maturity and respect of your child. The language used must adhere to your child’s capability. It is not something you may see right away, but it can be seen if it isn’t there. For example, if the nanny talks to your teenage child like a baby, do not hire.


Caring for a Rett Syndrome child is a labor of love. Your caregiver’s heart must be in the right place. A caregiver with impeccable education and background may not have the compassion needed to care for your child. Pay attention to the details. Compassion wears many masks. For example, if a potential nanny states they have a calling to help someone less fortunate, or if they refer to your child as a poor child, their compassion is faulty. Let them talk, allow their heart to reveal intentions, and focus on the best fit for your family.


Find out how the potential caregiver deals with stressful situations. Ask for specifics. How did they handle an emotional breakdown, or even a physical one? It’s a bad sign when the candidate says, “I’ve worked with lots of kids.” The answer is too general. Trust your gut and probe for specifics. You know your child better than anyone and you are aware of your child’s specific needs.

Strength and Energy

Caring for your child is a labor of love, but also labor. Make sure your caregiver is physically able to withstand the duties and tasks required of the day. There are tactful ways to approach the subject when interviewing the potential nanny or caregiver. Ask them specifically if they are able to lift a 75-pound child, or fold a kid-cart and position it in the trunk. Whatever your care plan calls for, make sure the caregiver can provide.

One last tip to remember when searching for a caregiver:

The caregiver is only as good as they are to themselves. This means that caregiver’s self-care is critical to the success of the entire family. A Rett Syndrome caregiver, similar to any special needs care provider, must practice self-care on a daily basis in order to care for your child safely and effectively. Don’t be afraid to ask about self-care. Do they exercise, eat healthy, have an outlet or hobby? Will this be their only job? Do they have outside obligations that pull them in too many directions? Know your caregivers and how they care for themselves.

As always, never make a hasty decision based on frustration or exhaustion. If your gut is unsettled, do not proceed with the hire. Take your time and find the right babysitting options for your Rett Syndrome child. The methodical process pays off in the long run.