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Child Care for Special Needs

Nik is 9 years old and has multiple disabilities, including cerebral palsy, autism, a seizure disorder and congenital heart defects. He is nonverbal and uses a speech-generating device. He is also charming, curious and adventurous. This combination of characteristics keeps his parents, Beth and Christian, ever vigilant – and makes it particularly hard for them to find child-care providers.

“He is in constant motion and highly impulsive, to the point that he can’t be left unattended even from one room of the house to another,” Beth says. “If I’m not right in the room with him, I’m likely to find him in some other part of the house rummaging through things to find something he thinks he wants.” Finding child care for Nik is a challenge, Beth says, because, in addition to understanding his special needs, providers need to be able to keep up with him physically and engage with him as both a companion and a playmate.

It’s a theme echoed by many parents of children with special needs, whose children are not always able to manage the noise, activity level or lack of structure sometimes found in traditional day camps or afterschool programs. For parents who work outside the home, this creates an especially challenging dilemma, the solutions for which often require creative problem-solving, flexibility and a great deal of planning.
Working out a working schedule
For some parents, such as Beth and Christian, the cost of quality child care is greater than the potential income generated from working outside the home. Beth says she hasn’t been able to work since Nik was born; at that time, he was on oxygen and required around-the clock medical care. She and her husband calculated the cost of child care, which required trained RNs, and figured out they would have needed to net close to $200,000 a year. That wasn’t an option, so Beth became a full-time stay-at-home mom. Christian changed careers as well, leaving his job as a mechanical engineer and returning to school to become a specialty care nurse.

For other parents, the best solution involves shifting work schedules. Kerry, a single mother and writer-editor at a university, tried to maintain regular office hours when her daughter Emma started an autism intervention program that ended before Kerry’s workday was done. Though she was able to locate child-care providers, she couldn’t find any who were able to work long-term. After hiring and losing four sitters in 15 months, Kerry found that the instability was just too hard on both her and Emma.

Kerry decided it was time to approach her boss to discuss a modified work schedule. She had prepared her proposal and framed it carefully. “What I’m going to ask for might sound kind of crazy at first,” she said, “but please hear me out. You’ve watched things unfold as sitters came and went. You’ve seen me have to leave unexpectedly or change my schedule because of someone else’s lack of reliability. I know you’ve seen how stressful it’s been, and while I’m dealing with this, I’m not the employee I want to be, because I can’t fully focus while I’m worried about my daughter. I want to change that, but I need your help.” Luckily, Kerry’s boss was willing to give a modified schedule a try. After just a week of a schedule that had Kerry telecommuting for a portion of each day, her boss was sold by the reduction in Kerry’s stress level and the increase in her productivity.
Finding candidates
Not everyone is able to solve their child-care issues by modifying work schedules, and many must seek outside care. Daisy, whose son Amigo, now 21, is congenitally blind because of a hereditary disorder, tried to enroll him in his school’s afterschool program when he was younger, but quickly found that they were not able to meet his needs. “It was a nightmare,” Daisy says. “The staff had no training, and the discipline was really inappropriate.” Daisy began seeking out neighbors who might be willing to provide child care.

As Daisy found, networking can be a key to success when looking for a child-care provider for your child with special needs. People who are familiar with your child can be invaluable in helping you branch out to find sitters who are the right “fit.” Spreading the word to friends, family members, neighbors, church members and others in your community is often a good way to start the process.

Your child’s school community can also be a good resource in finding a child-care provider. Often, people who work as one-on-one aides for children with special needs are interested in supplementing their income by providing afterschool care. A teacher or paraprofessional aide might be willing to forward an e-mail along to the network or post a flyer in the teacher’s room to help a parent who is seeking care.

Local colleges can be another valuable resource for parents. For Gemma, colleges have been a reliable source of sitters for her three children, two of whom have autism. “I’ve found great sitters who are majoring in education and planning on a career in special ed or speech therapy,” she says. Students with that sort of related academic interest not only bring a greater knowledge base but are often interested in gaining additional experience and taking on new challenges. Colleges may have online employment websites for parents to visit. If not, a well-placed e-mail to a career development office, internship office or even a faculty member who teaches in child development, psychology, nursing or education could be the key to finding the right sitter for a child with special needs.

Several child-care websites provide additional options to parents who are seeking sitters. Care.com has a search area devoted to special-needs child care and gives providers the opportunity to list the disabilities with which they have experience. Both care.com and sittercity.com offer background checks and references for care providers.
Choosing a provider
Once you’ve identified potential sitters, the screening process to identify the “fit” with your child and family is an essential next step. You should feel comfortable scheduling a formal interview with potential sitters and asking a broad range of open-ended questions. It’s important to remember to structure questions so they’ll yield the most valuable information. A question like “Can you think on your feet?” is likely to elicit a one-word response: “Yes.” Instead, try asking questions that require a more thorough reply, like “Can you tell me about a time when you’ve had to deal with something that you didn’t anticipate?” Develop a list of questions in advance, but be ready to stray from your list to follow up on things the candidate says. Wherever possible, try to get below the surface-level easy answer to get to the core of what this provider will bring to your child and your family.

Some questions to consider asking are:

How long have you been providing child care?

What are the ages/developmental levels of the children you’ve worked with?

What experience have you had with children with special needs?

Can you tell me about a time when you’ve had to handle inappropriate behavior from a child?

Can you tell me about a time when you’ve had to handle an emergency? What happened and how did you react?

What do you like most about working with children? What do you find most challenging?

Describe the perfect working relationship with a parent. What would you expect from me?
At the same time, it’s important to use the interview as an opportunity to talk frankly about your child’s needs and the unique challenges they might present to a sitter. Watch carefully for the sitter’s reaction. If she seems taken aback by anything you say, ask about it. Think about the kind of style that works best with your child: Does she respond better to a highly structured environment or a person who is able to go with the flow? Does he want a child-care provider to engage with him nonstop or will he need some space? Does she warm up to new people easily or is it likely to take some time? Share that information freely and ask your potential sitters for their thoughts about what you’ve shared.

“Get references and check them,” Gemma adds, “but trust your gut. If you don’t ‘click’ with a sitter, trust that. Child care is such an intimate thing, especially if you are a family with a child with special needs. Personal chemistry is important.”

It’s also important to note that personal chemistry goes both ways. A sitter may find, after one or more visits, that he is simply not clicking with your child and that the fit is not right. Let him know up front – before the first interaction – that you will understand. Gemma states it frankly to her potential sitters. “We are a peculiar family and not everyone’s cup of tea,” she says. “I’m not offended if working for us is not fun or not your thing. Just let me know. If it’s too awkward to tell me in person, drop me an e-mail.”
Preparing your sitter
Once you’ve selected a sitter, solid preparation can spell the difference between success and disaster. Consider inviting the sitter to spend some time with your family in advance. Let her see how you interact with your child, how you intervene with trouble spots and what the regular routine looks like at home. Invite her to ask questions about what she observes.

Talk to your sitter about what she might expect from your child. Try to identify your child’s strengths and challenges and be as specific as you can be about your most effective intervention strategies. Some issues to consider covering include:

How does your child communicate? Are there communication strategies that are particularly effective with her?

Is there any important medical information that your sitter should know? Will your child need medication while you’re gone? Are there any warning signs that the sitter should know? If so, what should the sitter do if they emerge?

Does your child have anxiety triggers? If so, what are they? What things help calm him down most effectively?

What are your expectations surrounding food? Is it appropriate for the sitter to give your child snacks? What sort of assistance does your child need?

How much direct supervision does your child need? Is it OK for your sitter to be in a different room or should your child always be in plain sight?

Does your child do best with a structured activity schedule? If so, how would you suggest that the sitter break up the time?

What sort of toileting assistance does your child need? How much privacy should the sitter afford her? What should the sitter do in case of accidents?

What are your rules surrounding screen time? Can your child watch television or use the computer while you’re gone?

Are you comfortable with the sitter taking your child outside? In the car? Do you want to be informed in advance if they leave the house?

Will the sitter be putting your child to bed? If so, what is the bedtime routine? Will your child need assistance putting on his pajamas? Does he wear a diaper at night?
Discuss these issues in advance with your sitter. Be sure to put the information in writing as well, as it can be a lot for a sitter to remember. Send the written document to the sitter in advance but have a hard copy on hand when the sitter arrives.
Planning ahead
Once you’ve settled on a sitter, think about the qualities that make her a good fit. Consider expanding your child-care pool so you’ll have options when your primary sitter is unavailable. The more providers your child is familiar with, the easier his transition will be when you need to be away. Predictability and routine can be a comfort to children, but having a routine that involves more than one sitter could help your child be better prepared to manage the sudden changes that sometimes occur.

Remember that a sitter who’s a good fit for your child will also have a good sense of why the fit is good. Ask her to recommend other providers who could serve as a back-up when she isn’t available. Let her know how much you value her work and how much you appreciate her understanding of your child.

Consider as well that every child-care provider brings a unique personality and skill set, and though their approaches might be different, a variety of styles can bring richness to your child’s life. “I try to accept each sitter for who and how she is,” Gemma says. “The temptation will be to compare sitters, especially newer ones to treasured old favorites. But I’ve found that each sitter has her own brand of wonderful. They will come to love each of your children as you do, which is ultimately my favorite part of having sitters. I just don’t think it’s possible to find too many people to love your kids and for your kids to love back.”

The introduction of new people into your child’s life can be important, even for those who work at home and don’t rely on day care to cover job schedules, as Beth, who is at home with Nik whenever he’s not at school, has found. “Nik needs to be with other people, and we need a break from each other,” she says. It’s also important for her and Christian to find time together that isn’t solely focused on Nik. “Every once in a while, I’ll ask my parents to come down to sit. We’ll go for coffee and just take a drive in the country. The biggest challenge is learning to think outside the box.”

Published July 2013