Words to live by---

These 3 things remain true to the "Journey of Autism". Anyone or everyone can advise you;

ULTIMATELY you MUST go with what you feel is right. "GO WITH YOUR GUT."

Once you have arrived at this decision; "NEVER GIVE UP"!

LASTLY "Ya Gotta do, what Ya Gotta do!"



Thursday, June 3, 2010

Operational Mannual

Many years ago I attended a program for Dakota where the parental advisor gave us an assignment-----
"I want you to create an "operational mannual" for your son or daughter." "Lets just say that we do not know the future and any one of us could go out and get killed, drop dead or end up in a hospital tommorrow." " Arent your children fragile enough without routine or schedule being disrrupted? If a parent was not there; could it cause your child to end up in a tail spin?"
Why allow their world to fall apart any worse than it would if your were not there?  The assignement was to assemble information about your child so that a perfect stranger could pick up the pieces and TRY  to make your child world  OK without you.

My mannual developed a life of its own and is probably much more than necessary but heres what I tried to do: Paint a picture of my son and his daily weekly and monthly routine.I included Family contacts. support people {ones that were in his life} diagnosis, prescrpitions,medical history and background,Daily routines-- bathing,toileting, eating, bedtime---Eductional back ground including schools and teachers that did well with him and activities he excelled in,certain ways he was at home, what TV shows he likes and activities he did and any special little thing that set him apart from typical. Like the fact that he does not understand how to blow his nose or that he does not swallow pills. Additionally I included 3 or 4 articles about Autism and included network info about different no profits that could offer info,support or help.I also added info about places he liked to go to and how he did in each environment. I put hints in there about things that seem to trigger Dakota and non preferred tasks . 

I guess my point is that every kids world would be turned upside down if their parent wasnt there tommorrow-- but dont we owe it to these kids to have the best support they can get. All this is in your head and unless its is written down NO ONE KNOWS IT! and your child probably cannot express it--

So think about it. Make an "Operational Mannual" and hope you never have to use it---You can even use a your computer and burn it on to a CD-- I utilized a notebook and included pictures and magazine articles plus reference material like pamphelets so that somone has an idea of where to start.      

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