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