Autism and Respite Care

At some point, many of us are caregivers for someone. If we are parents, we were at one time responsible for the health, feeding, clothing, sheltering, and safety of our young children. Maybe we have adult children, parents, spouses, or siblings who come under our care for short or long periods of time.

When my children were young, I could call grandparents or a babysitter if my husband or I wanted to go out or even take a short vacation.

When the care receiver is an adult or a child with special needs, it may not always be so easy to find someone to help relieve the caregiver.

When I was a teenager, my maternal grandmother moved in with my Aunt Helen. It was a difficult transition. Growing up, we had visited my grandparents every Sunday, and Aunt Helen’s family almost every Friday. As a teen, my life was busy so I missed some of the drama that accompanied the transition. I was aware, however, that there seemed to be a new coldness between my mother and her sister. After my grandma died, my cousin, who is older than I am, told me that her mom was very weighed down by the endless responsibility of caring for Grandma. She wished my mother would have offered to take her periodically for a day so that she could have a break. In the 1960’s, I don’t thing people used the term respite care.

Recently I have read several articles discussing the importance of breaks for caregivers, who often suffer from their own mental health issues as a result of the responsibilities of caring full time for others. This is especially true for parents of children and adults with special needs, sons or daughters who may never be able to safely take care of themselves.

But where do you find someone to watch a child with autism who may have frightening meltdowns?

I talked to the individual who organizes autism services at a local not-for profit. He told me, “Families want ABA therapy. They want parent training. They want respite care. They want social skills. Those are the basic things that they want.”

When I asked him if his organization provided all of those services, his response was discouraging. “Not at this time. We are at capacity for all of our services. We have waiting lists for everything or we don’t have funding for it.”

Their waiting list is so extensive, they are not even adding new people to the list.

Here is an excerpt from my book that explains what one mother shared with me.

            Usually Mom hires one of their male therapists or a “babysitter that’s known him long enough able to handle him which, you know, you can count on one hand, unfortunately, who it could be…but no family members. He’s too big and aggressive and things, and our parents can’t do it you know, which stinks.” (From “Conversations About Autism: Real-Life Experiences of Struggle, Acceptance, and Hope”

Another mother I know told me that she uses a site called https://www.care.com/ to find college students who are studying to be physical, occupational, or speech therapists. She hires these young people for respite care for her teen daughter.

One family I know hires people from their son’s adult day program to help at home.

Depending on the source of respite care and the availability of funding, these might be costly services for a family.

A few months back I read a post on social media in which a mother shared a letter she had received from a respite service. The letter was asking if she wanted to remain on the provider’s waitlist for respite services. She had been on the waitlist already for five years!

What can families of children with autism do when respite services are not available?

The mother who received the letter suggested ways that friends and family can help.

  • Just check on the family. Last fall, I posted about families who feel abandoned by friends after their child is diagnosed with autism. At conversationsaboutautism.com/2019/11/18/ghosting/.  Maybe just checking in via email or phone would help caregivers feel less alone.
  • Bring over a dinner. I am sure this would involve contacting the family to learn about food preferences, allergies, or sensitivities, but would probably be appreciated.
  • Friends or family members who don’t feel comfortable caring for a child alone could just offer to sit and play with that child while mom or dad relaxes in another room. This seems like an amazing idea to me!

If you have a child with special needs, do you use respite providers? Are there ways you would like others to help you get a break?

4 thoughts on “Autism and Respite Care

  1. We had no one. I was losing my mind, so stressed out, so depressed – and my mom said, “I just can’t.” Declan was “too hard” to watch. My husbands parents have never been involved much with our lives, and on top of that, they felt Declan was fine, he could make eye contact with them occasionally and we were just making too big a deal of things. Both mine and his parents would take an older child for a sleep over sometimes, but just one at a time because they were “too hard” together. Their assessments were all true, I just thought if anyone was going to help it would be them. And if they weren’t going to help, how I could I bring some outsider in just so Bob and I could get a break? So we didn’t. It was very hard. In the past year, if Catelyn is a friends house, we feel comfortable leaving Bobby in charge of Declan for us to go out to a dinner. I think we’ve only done that twice, but it was nice to feel a bit of freedom.

    Liked by 1 person

  2. I recently read a blog post written by the mother of an adult with autism. She sounded so alone. She had day care and it was clear that she could get out for brief breaks sometime (so maybe respite care) but she was at her end. She sounded so lonely and depressed. Your post makes me realize that offering care might be the nicest way a person can help a family in this situation.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s