When you have a child with an autism spectrum disorder (ASD), even the most mundane parts of life sometimes seem to require a super-human effort. The idea of holding down a full-time job can feel overwhelming, since raising your child and advocating for him or her already requires so much of your strength and energy.
Many parents of children with special needs do choose to stay home to devote themselves to their child and his or her care. Others may choose to continue to work or have financial obligations that require them to work full time, either for money to pay the rent or to keep the medical benefits necessary to get proper care for their family. When a child has special needs, the necessity for quality medical insurance only becomes more apparent. It’s easy to feel caught in a Catch-22.
So can it be done? The answer (as it so often is in the world of autism spectrum disorders) is “Yes, but …” Just as you modify your home environment and school environment, so must you modify your work environment.
Working from home
One good scenario is to work from home. You can get the majority of the work done while your child is at school (or while your child is involved in a project or his or her own) and be quickly available should an emergency arise. You can schedule therapy, IEP meetings and other appointments without having to worry about requesting time off. You are there when your child gets home from school and don’t have to deal with the added challenge of finding appropriate after-school care or questioning whether your older child is safe to be at home alone. This option would, however, require you to have the discipline to get the job done in spite of the numerous distractions.
Working on site
This scenario is where life start to get challenging but I can tell you from first hand experience that it can be done. I believe that it is helpful to be upfront and honest about the challenges that you face and hopefully your employer will be willing to create a flexible schedule for you. It is not, however, necessary, and an employer cannot force you to explain.
You absolutely must have a FMLA document on file. The Family Medical Leave Act allows you to take protected leave to care for an ill family member for up to 12 weeks per year without being penalized. You also retain full benefits during this time. Some companies will allow you to use sick pay or vacation pay when you take leave, and others won’t, so be sure to work with your Human Resources department and know what you are entitled to. Fill out the form to reflect intermittent leave. This allows you a certain number of “episodes” per month, and reflects the amount of time you would expect to be out per episode. You know your situation better than anyone else, so determine how often per month you might have to leave work and fill it out accordingly. Your child’s medical provider will need to fill out a section of the paperwork.
Communicate proactively with your provider so that he or she knows what information your HR department needs. Many kids with ASD have additional co-morbidities so you may need more than one form. I personally have two FMLA documents on file: one filled out by my child’s psychiatrist and intended to deal with behavioral outbursts at school and the other filled out by the pediatrician to deal with physical ailments.
If possible, request a non-traditional schedule. It is helpful to have a set day of the week to schedule ongoing appointments without having to request time off or use the FMLA. You could work four 10-hour shifts to have three days off per week, or work split shifts, or break up weekends. Other options are available as well, such as occasional telecommuting or job-sharing. I have a schedule that alternates weekends, which allows me to have Tuesdays off.
Please don’t forget to take some time for yourself. You have vacation days, use them! Schedule a quiet day off for yourself, get a massage, have coffee with friends. Sometimes it’s nice to take a vacation day here and there instead of taking a chunk of time off that you feel obligated to fill with activities. It’s easy to feel burnt out when you have so much responsibility, so make sure to recharge periodically.
After School Care
This is another challenge that must be faced when both parents work full time. Because of the impulsivity associated with Asperger’s Syndrome, it might not be a good idea to allow your child to come home to an empty house. In this case you will need to make other arrangements. Programs such as Boys & Girls Club provide a safe place for kids to go after school and they often have child care available for kids at the elementary school age. The leaders are trained to deal with a variety of social issues, and have usually seen everything under the sun. Schedule a meeting with the program director before signing your child up to discuss his or her needs.
Another option is to contact a child care referral line. As part of the interview process ask about the provider’s experience with special needs children. Be sure to explain your own child’s needs so that you can determine whether this provider is a good fit or not.
Keep a good support system around you. Ask family and friends for help and see if they can be “on call” in case your child needs to picked up or cared for and you can’t get away immediately. Many other resources are available for special needs child care. Check with your child’s therapist for local groups that can help out in this regard.