This is a recurring theme. More than anything in the world, LuLu wants to be "in charge".

Sadly, she can barely be in charge of herself on most days -- not able to self-regulate, self-calm, self-advocate through the day. But if she had her way,she would be president of the world.

I take it as a sign of improvement that she's able to verbally explain her great desire to be in charge, rather than just to rail against authority, as she used to do. It is still mind-boggling though, that she seems to lack the insight of just what it means to... more

Over the weekend, a young man from our church came to repair the remaining holes in our drywall (in the hallway near LuLu’s room). These are the last remnants of LuLu’s destruction of our house. It has been more than six months (late March) since any part of our house has been destroyed. A cause for celebration…maybe?

I’m thrilled we’ve reached this point as it has been a real hot button of mine to have my house destroyed, possessions thrown and broken, holes punched in drywall, windows kicked out, closet doors torn off. That was “the old... more

Ten is a fun age for raising kids, even special kids. And while LuLu is not 10-years-old in much of her behaviors or social interactions, she is definitely turning into a "kid" and not so much of a "baby".

Her birthday gifts, in addition to the coveted chimpanzee, were varied. She got lots of books and educational materials from dear ol' Mom & Dad (nothing like picking out things for Ladybug Elementary.) While she was very interested in them all, it wasn't long until she declared that she was disappointed in the presents she'd received.

LuLu... more

On the way to dinner this evening to celebrate LuLu's birthday, she started to yawn.

"Are you tired?" Super Dad asked.

"Yep," LuLu responded. "You just get more and more tired with each decade."

Super Dad and I laughed and laughed...she's right, you know, even if LuLu's only reached that first decade!

LuLu is sick again today – like yesterday. In “real life” I would have kept her home from school. But in the alternate universe that is our reality, school is home. So, she did a little reading and math yesterday. And today, my voiceless child took a math test over 3 chapters. I didn’t necessarily want her to, but I let her choose two items of her scheduled day to do and she chose spelling words and math.

“Mom, do I have to do the test without asking you ANY questions?” “Well, you can ask me, but I might have to tell... more

About a year ago, I was overwhelmed with LuLu’s lack of social skills and with her open dismay at “not having any friends”. It began to dawn on me, along with all the other disabilities and symptomatic behaviors that my little girl was grossly lacking in social skills and what I now know as pragmatic language skills. And that this, more than many other issues she had, was going to severely curtail her chance at a “normal” life.

Side note: some researchers consider pragmatic language disorder to be a distinct disorder, while others... more

One of the things that truly makes my heart sing is when I realize that LuLu realizes that someone truly “gets it” what it’s like to be her. Being LuLu’s mom is HARD! But being LuLu herself is so much HARDER! It irritates me when people who interact with LuLu tell me how hard they are trying and how difficult SHE is. Being around LuLu is difficult, but SHE is not difficult. Why do I say this? Because I know she’s not trying to be difficult…she’s trying to deal with the difficulties in her way. That is, by definition, what disabilities... more

Gotta share this one before it slips my mind. LuLu is "figuring out" sarcasm. If you're "on spectrum" -- meaning a variant of autism -- figures of speech, subtle communications and body language are things you just don't understand.

But for LuLu, she started by asking "do you really mean that?" when she detects sarcasm. And now, it seems that she's internalized it even more.

On the way home from the grocery store this afternoon, another driver cut me off in traffic by pulling out quickly from one store and zipping back into another store,... more

One of the reasons I started the “LuLu says” category was to relate stories of our dear daughter and her incredible ability to “wow” us and to "entertain" us in various unique ways. One of those ways is the descriptive word usages she makes up. Here’s a glossary of the latest – with definitions supplied by LuLu:

Criminaling. This is the act of doing something that the police would arrest you for. Any type of crime, but especially killing, because that’s a big no-no.

Lousy. Word that describes... more

Sometimes I feel so dumb. Sometimes I wonder how I could have overlooked the significance of something so obvious. Yet...I can't kick myself too hard when it comes to parenting LuLu. After all, she is one complex little kid.

We have been doing The Listening Program for 4 weeks now. And I have blogged extensively about how it addresses auditory processing deficits. We are seeing good things.

On Thursday, LuLu was riding with me in the car.... more