The reality is, most of our kids need to be engaged most of their waking hours. Respite care for children is needed to give parents a break regardless of the length of time they have been on the autism journey.
In this blog I’ll be discussing what respite care is, why it is important for caregivers, and how you might begin to find respite providers where you live. Did you know that autism moms have stress levels comparable to that of combat soldiers? Being a caregiver to a child or an adult with autism can be both rewarding and exhausting and it’s super important to talk about respite care.
When both of my boys were young, we had au pairs living with us for many years. These amazing workers gave me a chance to work, to write my book, to start my online courses, and to travel the world speaking about autism.
Having an au pair also provided me with much needed respite and help caring for both of my boys. Especially Lucas who has moderate to severe autism. Without having au pairs live with us and helping us, I would have been stretched very thin and I wouldn’t have been able to do all I’ve done as a behavior analyst or as a mom.
I know people from all over the world watch my video blogs. In fact, in my online courses and communities, which I started in 2015, I’ve had parents and professionals from over 80 countries. I am so grateful for this. But I’m also very aware that respite care provision in a city in Idaho is different from respite care in Pennsylvania and different from respite care in Austria.
Respite care is basically someone who can provide care and supervision – and in some cases behavioral intervention – knowing how to engage your child. It’s a provision of care from one hour to overnight respite so that you, the parent, can get a break.
Let’s talk about funding issues. When we had au pairs, we privately paid for them to come and live with us in our home. Not all families can afford that. We’ve also paid for private babysitters and other helpers. But over the years we’ve also gotten funding, and now Lucas has a waiver that provides a lot of the respite provision and the care that he needs. But in every county, in every state, in every situation, how you get respite care is totally different.
There are huge waiting lists for autism care. I know how hard it is in my county and state. I can’t imagine it’s easy to get respite care in other places either. If you are looking for funding for respite – if you have a case manager or if you have a governmental agency providing some therapy – check with that caseworker, check with your doctor. See how you can get respite care. Be really vocal because if you need funding for respite you need to advocate for it.
Whether you are looking to privately pay respite or you’re looking for funding for respite, look for providers at Care.com first. I would really screen the providers not only for the distance from your house but also their backgrounds with special needs kids. Check references heavily. Care.com would have the ability to find full time and part-time nannies and babysitters.
I’ve even recruited therapists from Care.com. Though it’s not set up for recruiting therapists. It’s more set up for recruiting nannies and babysitters. But I’ve found some really good people through the site.
You might be thinking, “Oh, I don’t really trust that, it’s online.” But one of the first respite providers I found on Care.com was a woman named Amy. She was in school to become an occupational therapist. She volunteered with special needs basketball. I checked her references and she was first aid, CPR trained. I mean she was a gem and I found many, many people on Care.com with similar backgrounds.
In addition to finding people online at Care.com, you can also check with high schools or colleges in your area. A lot of times anybody who is in college or in high school with aspirations to become a special ed teacher, for instance, would make a very good babysitter. You could train them to engage your child and deal with any problem behaviors. You could also check with your church for volunteers and also your local community autism organizations or your caseworker.
Wherever you recruit from, do a phone interview first. Look at the information you can find online. On the phone interview, describe your child to them and check references. Then arrange for them to come meet your child and you. If you want to be extra careful, it’s also a good idea to check their driver’s license. Make sure they are who they say they are. It is risky to always have strangers in your home. So be careful, be smart and use as many safety precautions as possible.
Also, autism professionals, like registered behavior technicians, could become respite providers. I recruited a lot of Lucas’s current and past workers from my clients; the therapists that were working with my clients during the day. I would see if they wanted to work with Lucas in the evenings or on the weekends. These were just all independent contractors so it didn’t take away from my client’s time. Your behavior analyst, if you have one on the team, might be able to recommend some people.
You’re also going to need to train them. You can’t expect Susie Q who’s an occupational therapy major to come in and know how to help your child. In the beginning it might seem like a lot of work. You’re looking for respite care, but now you have to sit with your child and new therapist to teach them what to do. But the more intervention and training you can give to this new therapist, the more long term respite you’re going to actually have.
In summary, whether you’re a new autism parent or you’ve been at this for a while, getting a break by using respite workers is very important. Autism parents have stress levels that are really high. We want to maintain our ability to be the best parent, partner, employee as possible. We need to take some time for ourselves. Providers can help find candidates and offer basic training to those respite workers as much as possible.
For more information about how to assess and teach your child to reach their fullest potential – and to be as safe, as happy and as independent as possible – take my autism quiz at marybarbera.com/quiz. It’ll only take you two minutes. It’s for both parents and professionals. The quiz will help you get on the right path to reducing your stress levels and improving the quality of life for your child or clients.
