Desperately Needed: Respite - Autism Awareness
Exhausted parents of children with ASD need respite care

Desperately Needed: Respite

Everyone needs a break from time to time, and those of us with children who have extra challenges definitely need time to recharge. Most parents feel guilty taking time away from their children, but respite care is important because it provides a valuable way to regroup and rejuvenate your spirit and important relationships.

One thing I did for a sanity break is book the same respite worker every Monday and Friday and go for figure skating lesson. If I didn’t have this standing order, I know I would make excuses not to go out and stay home with my children. I know another mom who books every Saturday night to have a “date” with her husband. Booking regular child-care every week provides parents with a familiar face for their children and gives parents some time off to look forward to. All too often we lose ourselves in the day to day struggles of raising children with autism. It is just as important to make time for yourself, your significant other, and friends as it is to spend time with your children.

I initially had three main concerns in having anyone other than my mother care for my children in my home:

  1. How would my children react to somebody new in the home or someone they didn’t see everyday
  2. My children’s language difficulties resulting in them not being able to tell me if something happened while they were under this person’s care
  3. Worry about an outsider not following the children’s gluten-free/casein free diet or other routines.

I overcame these concerns with a few simple ideas to make the transition as easy as possible for my children.

How to prepare your children for respite care

  1. Explain about your children to their caregiver and give them practical tools that will help them communicate and soothe your kids.When the children were young, what I did to create the best possible experience for them and the caregiver was to explain the problems they had with socialization, sensitivities, and expressive and receptive language. I had a list of words that they commonly used posted on my fridge as a guide to understanding them. I also keep an updated list of favorite toys they liked to play with and where they were located. We used picture symbols, photos, and social stories of routines that happen in our house. Children with autism generally respond better to visual cues rather than verbal cues so I asked my sitters to use these aids with daily routines.
  2. Inform the caregiver of routines, so they can follow through on predictability. It was important not to disrupt household routines if the children were to remain calm and feel secure. I also let my caregiver know the best techniques to calm the children if they got upset.
  3. If your children are on special diets, leave food prepared including snacks. Both of my children are on gluten free and casein free diets. If I’m going to be away over mealtimes, I try to prepare their meals ahead of time so that I don’t have to leave complicated instructions. When the children were little and didn’t speak. I used to have a snack cupboard filled only with snacks they could eat. It was within their reach so they could pull out what they wanted and give it to someone to open for them. Keeping their food in an isolated place left no room for feeding errors.
  4. Book your caregiver 15 minutes earlier than you need.By having your caregiver arrive early you are saving a lot of headache later on. Walk them through all of the routines pertinent to that time of the day, give updates on moods etc.  and give the children an opportunity to get used to another person being in the home.

These simple preparations have made my respite time successful because my children are happy and secure even though I’m away.

The first two times I booked a caregiver, I stayed at home but in another part of the house. I could hear that things were going well and the children were getting along fine. My daughter would cry for the first few minutes that I left the room, but settled down within minutes. For my own peace of mind, I had to remain at home just to make sure everything would run smoothly. Once I knew the children would do well, I began to leave the house. Another way to help yourself feel secure in leaving is to begin with shorter outings and gradually increase your time away.

How do you find respite care for children with disabilities?

  • One way to find qualified people is through an agency that provides respite services. Larger communities would have these types of agencies. Good places to find respite support would be the local hospital, public health clinic, paediatrician’s office, the local autism society, or through government social services agencies.
  • Talking to other parents of children with autism can be a good resource too. Ask other parents who they use for respite care and where they found their child care workers.
  • Colleges and universities that have disability studies, special education, or psychology programs have eager students who want to get first hand experience with special needs children. They often make very good caregivers, being drawn to the subject matter.
  • There is an excellent book called A Stranger Among Us which discusses the pros and cons of hiring in-home care providers for children with autism spectrum and other neurological disorders. Everything from assessing the family’s needs and core values to advertising for, interviewing, hiring and training care providers is discussed, along with the special considerations necessary to support the needs of children with neurological disorders. It’s an essential read for anyone considering independently hiring their own caregivers.

Respite care is essential for your own mental and emotional health, and keeping up your other relationships

Take the time to find a respite service or a reliable babysitter in your area. The best gift you can give to yourself is time away from your situation because in the end you’ll return home after having been in a different space and feel ready to tackle the challenges of parenting.

Further Reading:

Grandparent’s Guide to Autism Spectrum Disorders: Making the Most of Time at Nana’s House

Top Ten Tips: A Survival Guide for Families with Children on the Autism Spectrum

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