spectrumom

Someone said to me today:  " Looking beyond today and next week and the next few months is a bigger job than a family should have to handle alone. As a community, what could we do to help?" As a family with autism, we have learned to mostly retreat into our family unit.  So few people are out there who can and will help, that we have learned to do for ourselves.  School helps some.  And there are a (very) few places where we can hang out and be our real selves with support from our community.  But not many. But soon we will not be able to form the fence that keeps us in and the badness (along with a great deal of goodness, I'm sure) out.  Our children will be adults.  They will require input from adult society.  School will go away and cease to be any kind of support.  We will get old and infirm.  And we will die.   We will have to start gathering the resources that will assist our kids.  As much as possible, we will teach them to find resources for themselves.  

Today I realized that in less than two years we will almost certainly have to apply for guardianship for Sam. It all started with another person discussing the process they are going through to get guardianship. "How impaired does a person have to be to consider guardianship?" I asked?  And then answered my own question. Sam has tons of skills.  He's in eighth grade.  He receives Learning Support for English and Science because of the reading involved.  He's working at grade level in Math and History and is fully included in these and other classes.  But he doesn't understand money in a sense bigger than "I save for computer games."  We will work on skills of rent and bank accounts and saving up for cars.  I am not sure that he would accept a medical treatment that involved pain but would better his life without a lot of support and someone else to make the decision.  He can't plan a meal or a grocery list.  Although those are skills that we wi

For some reason, urination at our house has become a severe chore.  At least as it pertains to Nathan. Nathan did not potty train until he was 7.  It was truly a joyous day when he did.  He had gone through poop smearing, and taking off all his clothes which made containment...interesting. But when he was potty trained, it all got easier.  When we were out, we had to remember to take him to the toilet, because he could not tell us he needed to go.  He mostly still can't.  But when he had free access to a toilet, he would take himself. with little fuss.  We could not leave the toilet paper out, because he would flush the roll whole. Our biggest concern was getting him to pull up his pants and not walk through the house with his family jewels displayed.  That and the problem that as he becomes bigger, and more mature, taking him into public bathrooms with me becomes more fraught with social issues. So those were our big issues.  Until about a year ago.  When (dum, dum, dum....D