spectrumom

Tonight our 15yo came down to get his dad to help him get the rubber bands on his braces.  "Oh.  And I accidentally spilled a glass of milk in my room." His little brother, whose life apparently is mostly supported by milk, had taken a cup upstairs.  But hadn't finished it before bed.  Sam had knocked it over and not cleaned it up. BUT.  He had told us.  Unasked.  With nothing to gain from it.  Unlikely to ever be discovered. Such a simple thing, no?  Mentioning a mess.  A mess that would soak through a carpet and possibly smell later.  That could damage furniture if not found.  He hadn't cleaned it up.  But he had mentioned it.  Unasked. These things that other people take for granted.  That are missed in the verbosity of daily life.  So expected that to not be told could be irritating.  "Why did you not tell me?" But for us is never taken for granted.  Is remarkable.  Is blog-...

Disclaimer: I never anticipate us being able to go to Disney World.  Ever. It is too big, too busy, too expensive.  I would feel like we had to do so much to get our money's worth.  And if Nathan couldn't do it and we had to leave, I would be devastated. I love Disney.  I've went there a lot as a kid.  My sister worked there (funny store about how she lost her job skinny dipping in the lake).  I did the high school band thing there. I know that Nathan would adore the characters.  He loves anyone dressed up in a character costume, and he would be fascinated. But. If everything went south, and the shit hit the fan, we would have to leave. And I have 3 boys who are very rigid, and not very able to adjust for the needs of their brothers.  Who would be understandably upset about plan changes and loss of anticipated pleasures.  In other words, I have 3 potential meltdowns.  All with the ability to raise the level of meltdown in the...

A blog posted on  Psychology Today posed a question that I've been considering myself: Why does society only consider the family's trauma of living with a person on spectrum, not the trauma the person who is on spectrum lives with daily? Which is a perfectly valid question.  Watching my kids, I know that I am aware of only a small percentage of what they face every day.  Due to their language problems and anxiety they relay only a small part of what they face.  Watching Nathan, who has only words to ask for a few things-food, some actions-I know he is SO frustrated with his inability to communicate, and inability to discuss strategies for dealing with his internal issues.  He is constantly bombarded with impulses and sensations. Last night, Nathan had a horrible gut bug with vomiting for hours.  Now he has diarrhea.  He couldn't tell us when he was about to vomit, not even call out 'mom' to get my attention.  After he would vomit into his b...

At some point, when our children are infants, we can imagine what it is like to lose control and harm them.  The vast majority of us never do.  But we can see losing our temper, being so sleep deprived and stressed that we hurt them. When we see stories of people who do such horrid things, we are shocked and appalled.  But a little voice in the back of our heads says "If the circumstances were right, who is to say I wouldn't do such a horrid thing?" It is like standing on the edge of a cliff and realizing you might jump.  But you never do. Some of those children grow into a diagnosis of autism or other difference.  Sometimes this includes severe sleep issues.  Sometimes self-injurious behaviors.  Sometimes aggression. Sometimes we can imagine losing control and hurting them.  The vast majority of us never do. When we see stories of people who do such horrid things, we are shocked and appalled.  But that little voice in the back of o...

Every time an autistic child is deliberately killed by a parent (known as filicide, committed usually a mother) there are usually 2 polarized reactions that I see in the autistic community.  The first is a chorus of parents saying "Don't judge.  Parenting is hard.  The situation was hard."  The opposing is to say "Autism is NEVER a reason to murder a child." And it isn't a reason.  But there are many parents who murder their children, often in a murder/suicide attempt, whose children do NOT have autism.  And I thought 'What do these people share in common?'  Because there must be commonality there.   And perhaps we are having the wrong discussion.  Instead of asking about the children's characteristics, perhaps we should be addressing the perpetrators' characteristics.  And then formulating a plan to address them.  We discuss primarily mothers because they are the most likely to be the primary caregivers and males murder/suic...

We are starting our 3rd year of homeschooling our 12 year old son.  My husband is the primary instructor.  Nathan is minimally verbal, with bipolar and associated irritability, and has self-injurious behaviors.  Many parents I hear say "I love those hours someone else is in charge."  But we are glad we homeschool. Here is why. 1.  He wasn't learning.  The people in charge of him, in general, underestimated him.  They changed over frequently and each new one would assume that his IQ measure of 46 was accurate and start at the beginning.  Again.  For some he was even doing ABCs.  Many of them he apparently held in contempt because he would act like he couldn't while his TSS snorted with laughter when the teacher would say "the poor dear doesn't understand."  Even if they did believe in his intelligence, the load on their time kept them from pursuing what had to be done.  He's reading now on a third/fourth grade level and doin...

This afternoon I took the boys to Walmart (a mistake, but a quick trip, I promise!), to a restaurant and our favorite ice cream parlor (Carmen & David's in Lancaster - THE most AWESOME ice cream EVER, I swear!) Nathan was starting to get grouchy, I'm pretty sure from the discomfort from a fairly large burn (front of thigh from nearly top to bottom, don't ask :_(  We're all unhappy about it.)  We did what we had to do in about 15 min and left.  But he got grouchier from there. I just got a new augmented alternative communication (AAC) app, Avaz which I *just* loaded on the iPad today and grabbed to take along.  I did a few adjustments before I left, but did much of it on the way.  I even had Sam add over a dozen icons while we were in the car.  So.  Easy to use?  Yes, very.  I'll blog on the app later in the month (I only get it for a month, so we'll see.) I knew Nathan didn't feel good, so I showed him the app.  I put him in t...