Guest Author - Bonnie Sayers
It has been several years since we have had a Respite Worker. In some States you can obtain a worker through an agency where the State or an organization picks up the tab.
Here in California the Regional Center will fund monthly hours on a yearly basis for an agency to provide respite service. Some people simply think a respite worker is a glorified babysitter, but that is not the case.
In a two month period we went through seven workers trying to find the perfect match for my two children on the Autism Spectrum. We had this one person, Maria, who was wonderful, but she left the agency to work solely with one family.
I was able to attend some support groups and trainings while Maria was employed through the agency we used at the time. She was genuinely interested in autism and regularly asked me questions about Matthew and Nicholas. She would wear protective gloves when she changed Matthew's diaper, read books with Nicholas and play board games with him when Matthew was engaged in other interests.
I have been with a few agencies with minimal results in finding someone who actually knows what autism is. I start by having a phone conversation with the prospective person before setting up a time for them to come over and meet the kids so we can see how everyone reacts to one another. Some have not even made it that far.
The bulk of the callers over the last year have spoken little English, had no transportation and did not comprehend autism. One person told me that her kids were wild too, so no problem. Another person told me that a relative out on bail for some felony would be able to drive her over. This other girl had a baby that was a few months old and her husband would watch the baby when she needed to work.
Most of the callers sounded like they just walked in off the street to inquire about jobs at the agencies and were given random numbers of families to call. I had one girl ask for directions when it turned out she took the bus and the directions could not have worked and she was calling from another street trying to find my house. She had the right house number, but wrong street. We were waiting to go to the library so we drove down to the gas station and I signed the time card and gave her two hours for her travel time.
The last girl kept coughing on the phone, but she had experience with autism since high school, although she was only in college, she had several positions already so she would not be waiting on me to give her hours. There was never a phone call explaining why she never showed up. In the past workers would call me up asking if I needed them to come. They seemed to get chummy with me and rely on the one household to give them work. I called many times to the agency to make complaints.
One time when I returned from doing errands I found a worker sitting on my couch drinking some hot soup while my kids were running around the house dragging a bedspread. I heard later from the agency that they fired the worker. One other person had her son drive her over and while I was out he came by and knocked on the door. I am still not clear whether she talked to him at the door or he came in or she went outside to speak with him. I do know that she no longer worked at my house or at the agency.
Here are some rules I have compiled that must be adhered to for anyone working in my home while I am out getting some respite or just running errands. These are not in any particular order since they are equally important.
1. Must be a non smoker
2. Proficient in English
3. Prefer someone with their own car
4. Knowledge of autism
5. Experience with someone on the Spectrum - can be a relative
6. Do not use the stove
7. Do not teach child to use the microwave
8. Do not answer the door - includes delivery people
9. No headphones to listen to music
10. Dress - pants at the waist, no visible underwear
11. Diapers get disposed of outside in trash.
12. No showers or bath for children when parent not present.
13. No playing in bathroom allowed - flushing toilet constantly
14. Do not over stimulate children
15. No jumping on furniture
16. No eating or drinking on the couch
17. Do not bring outside food upon arrival
One time a person arrived with a bag of food from a fast food chain to eat for herself. This created problems for my kids who wanted french fries from her bag. Each time I would return Matthew would literally grab ther person's purse and hand it to them and then physically push their behinds to the front door. This was clearly a signal that their time was over. Luckily Nicholas could communicate with me what took place while I was out and then I could do an inspection of the home to find out what the person ate and what they all were doing.
What often happens is a person not familiar with autism gets the position and they physically play with kids like they are normal. This sets the kids into over stimulation with the person thinking the kids want more. It is really imperative that a Respite Worker have experience with children on the Autism Spectrum.
What happens instead in our household is the person gets comfortable with me the first time they come since I stay here and work on computer while they hang with the kids. Next they view me as a friend and tell me things. This is useful data to know as the parent, but not for having the person stay alone with your children.
I do not feel comfortable having young girls watch my children who also happen to have little children at home. I used to take public transportation for many years, but I always arrived at job interviews early. The people I request come over to meet are late and do not take the position seriously. It should be treated like a job interview where you are entering someone's home to see if you are a fit with their special needs children. A little effort would go a long way and maybe even get you a return position on a regular basis.
We are still looking, not in any hurry since I get my respite while kids are at school. I would like to get out and attend some support group meetings at night and do some conferences on the weekends. Until I can find a suitable person that meets my requirements I remain without a Respite Worker.
Share your experiences at the Forum and add some rules I may have missed that you require for your Respite Worker.
The interests of children with autism through the years
In tune with your autistic child
Lifespan Respite Care Act
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.