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Caring for Michael
13 Rules of Survival with Asperger's Disorder

By Jonathan A. Salit

(Page 2 of 3)

5.   Limits, guidelines, rules, call them what you will, they are a must. The most successful caregivers are the most rigid.  Every exception becomes their rule; therefore, no exception equals no violations. Two negatives always make a positive. However, that being said and being constantly tested, the human side does occasionally give in.

On just such an occasion, I had prepared a gourmet breakfast, after explaining to Michael that this was a rare treat, that he was not to expect it again because it tested the limits of his restricted diet, and that he was to add nothing or ask for anything else. He says “Sure, sure, I understand; but do I still get potatoes?”

6.   This is a new disease, syndrome, symptom, birth defect, brain damage ... The point is, you did not cause it, you cannot fix it, and you can only treat the symptoms.

7.   Take time away from your charge. You had a life before and you should have a life now. In the end, you will both benefit from it. Try not to fall into the trap of talking about your patient as the main topic of discussion. This is harder than you think. Our charges do so many fascinating things that are truly amazing in so many ways that others are very interested.

8.   It is not possible for them to think of anyone but themselves first. This not personal, it just is.

Michael once told me that when his parents die (they are holocaust survivors currently in their mid eighties), it will be his fault ”because people will say, ‘Think of how long they would of lived if they didn’t have Michael’.” He was serious.

9.   We are rewarded those times that they do remember and do get it right. We are rewarded in that even though they do not appreciate what we do for them, we do make a difference.

10.   As childlike as they are in so many ways, unlike children, they will never grow up. If you are that one in 10,000, it means you will never be appreciated by the person you are caring for. You will be the savior to the family, although they will rarely visit.

11.   The person you are caring for remembers everything that is important in their world. They have total recall and can retrieve that information instantly.  However, remembering other such mundane things like putting dishes away, picking up something that drops, taking medicine, turning off the TV... that they choose not to remember. It’s not malicious; it is just the way they are wired.

 

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