Building a Reliable Support Staff

I realize the day will come when my husband and I can no longer be in Robin’s life. We’re definitely replaceable; however, my biggest concern is the learning curve of her new providers. This close and personal interaction with an inappropriate person could easily encourage her autism behaviors to reappear.

Trying to meet this need, a friend suggested I purchase the book, All Cats Have Asperger Syndrome, by Kathy Hoopman (Jessica Kingsley Publishers, 2006). This book gave me the vision to write one just for Robin, Ode to My Staff. Each page has a picture of Robin, emphasizing a particular uniqueness or concern she has. Sample pages include:

Ode to My Staff

  • Respect me. Don’t talk about me, talk to me. Remember—nothing about me without me.
  • I expect you be totally honest with me—at all times.
  • Please make sure I’m eating a gluten-free casein-free diet, sleeping well, and taking my vitamins properly.
  • Do not enable me. I can do it myself, but I may not realize I need your support to make that happen.
  • Have patience with me, and give me time to complete a task. In other words, don’t rush me.
  • I do need change in my life. Push me to try new things even though I say no. I can get my priorities mixed up sometimes and I think my routine is more important than trying something new.
  • Don’t allow me to get stuck by my autism force.
  • Sometimes I get frustrated, but it’s not because of things you think I’m frustrated about. My brain gets overloaded and all mixed up sometimes and I can’t clearly tell you why I’m anxious or upset.
    • Example: I appear angry when you call. Actually, I’m angry because you didn’t call me last night, as you said you would, and I don’t want to talk to you right now.
  • I don’t see obvious things other people see, yet these things are important to me. Someone needs to keep me on track.
    • Example: I need you to help me review my closet and remind me when to purchase new clothes.
  • I need you to remind me of health and safety issues because I forget the importance of safety rules and recognizing danger.
    • Example: Sometimes I come home after dark, and I forget to check my surroundings when getting out of my car. Also, I forget and carry too many bags into the house when I can get them in the morning, when it’s light outside.
  • Remember, I need love and encouragement, an occasional bit of advice, and a hug once in a while.

For additional information, read Asking Ann About Autism .

Ann is my guest for the show on July 15th on Your Beautiful Child Radio on July 15th 11am EST