spectrumom

I've been reading some BS on the webs about how some parents of kids with autism have some butt-hurt because they don't have the kids they wanted. And from the way it's worded, it sounds like it's most of us. So I wanted to put it out there what I'm butt-hurt about. I'm hurt that my kid hurts himself. I'm hurt that he hurts others. I'm hurt that other people, both peers and adults (HELLOOOOO asshole teachers) bully my child and think he is less than respect-able. I'm hurt that people assume my kids are not able because they have a difference. I'm hurt that their lives will be limited by that, in some way. And already have been (like not invited to their class parties, hmmm?) I'm hurt that my kids are not always able to speak for themselves. I'm hurt that my kids cannot choose for themselves. And, I'll admit to some butt-hurt that my life is often difficult because I put my kids' needs ahead of my own (I really,...

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 th...

As a parent of a child with autism I find myself wondering "When does this end?" He's nearly 13. When does he start sleeping?  When does he stop wetting the bed?  When does he start telling us when he needs to pee?  When does he stop flushing washcloths down the toilet? When can we stop locking knives and pills and sweets and tools and powdered everything in the basement?  When can we have more couple time?  When do I get to take time away without feeling that my husband is being put upon?  When does he get time away without me feeling overwhelmed? Autism often feels like a perpetual toddlerhood with increasingly  large kids. I am grateful our sons have learned to use the toilet, because so many I know haven't. But I want so much more.  I admit much of it is for selfish reasons.  Although much of it is for our boys too. I want Sam to achieve his goal of driving. Of getting his own apartment. I want Nathan to be able to declare his goals so th...

I've been reading this really excellent book about adults with autism by Nancy Perry.   It's taking me a very long time to read it.  Not because it's obtuse or technical.  Really, it's very readable.  Lots of interesting stories to highlight her points. No, it's taking me a long time to read it, because at the same time that I'm learning, I'm being forced to face a reality that I've managed to ignore. At almost 15 years of age, Sam has very major executive function deficits that he may or may not ever be able to deal with independently. Each EF deficit can be broken down into hundreds of practical skill sets that can be taught.  For example, we can teach Planning, Sequencing and Organizing for hundreds of different skills.  Following a recipe, taking care of an apartment, getting ready for school or work, writing a paper, shopping for groceries, personal hygiene.  The list goes on and on and on.  And it changes with each new phase of ...