LuLu emerged from her bedroom this morning with lips coated in a rustic brown color. She has large, full lips and did look a great deal like a Brats doll.

“I look sexy!” she declared.

Rather than panic or even hint at disapproval, I’ve learned to respond to things like this with a simple question, “What does that mean?” If I react with shock to anything, it immediately cements that thing into LuLu’s brain, hardwiring it to be brought up over and over (usually at the most inappropriate times). So fear of LuLu proclaiming herself “sexy” at church, the grocery... more

Cooped up in a hotel room with limited entertainment options (once it’s dark at the beach), we had little to do besides watch Super Nanny as a family. Tonight’s episode, like many, included three spoiled children and two permissive and submissive parents.

What was the most entertaining for Super Dad and me was watching LuLu’s reaction to the whole show. LuLu was cheering Jo on with all the advice she was giving. She was especially for the idea that parents should be able to tell their children “no”. I quickly turned around and told her “no”.

She... more

Saturday we went to Chuck E. Cheese. “Big deal.” you say. Well it was around here. You see, LuLu had never been. Several years ago, when we finally figured out that noisy atmospheres contributed to her meltdowns, we declared that Chuck E. Cheese was the “wrong” place for her.

So, when she was invited to a birthday party there yesterday, she was presented with quite a quandary. And for the first time, the way Mom and Dad handled it was right on! We didn’t care whether or not she went…and we had a contingency (bail out) plan on all in place.

LuLu fretted... more

“Do you miss me, Mom?” LuLu’s repetitive (call it perseverations, tics or whatever) phrases and sayings are driving me crazy today. And this one is at the top of my list. She asks me this about 10-15 times a day. And, of course, it is utterly ironic that there’s no possible way for me to miss her, since she’s with me 24/7. My other favorite is the equally charming “I love you/I hate you.” She alternates these sayings all day long, sometimes in the same breath, and I truly believe that it has a direct relationship to how she’s feeling physically, but can’t find a way to... more

These were the words written on the make-shift masking tape sign on the back of each stall door in the women’s restroom at my older daughter’s high school. LuLu and I saw them last night as we were using the restroom after Kay’s chorus performance.

LuLu did remarkably well during the 1.5-hour concert, given that she often is unable to handle the sensory overload of the applause, and we often end up leaving in a rush as she starts to come unglued.

We were positioned on the aisle in the far back, with ever-vigilant Mom prepared to beat a hasty retreat,... more

“Phelmbologist.” That was the way LuLu answered her pre-writing activity on Monday. Little did either one of us know, not LuLu or her science-challenged mom, that it was PHLEBOTOMIST. But I got the drift of what she wanted to be. She wanted to be the one who drew the blood…and she wanted to work in a lab.

Today, we had the ultimate excitement of going to the lab of the local children’s hospital for blood work. Usually we go to the nearby clinic that our insurance covers, so LuLu actually knows these women by name. Today we went into Atlanta and to the... more

I can’t begin to comment on Nancy’s blog about our phone conversation, except to say that Nancy is one of the few people (Super Dad and my business partner are the other ones) with whom I’ll have a conversation when LuLu is in the middle of a rough patch. The rest of you get my voice mail!

But I do think I need to add, for the record, the glimpses of the cool kid I see underneath all this mess of diagnoses. It is the knowledge that the cool kid is in there that keeps this boat of near insanity... more

For all the relief I felt when LuLu was hospitalized (and the many other emotions I’ve documented since then), I didn’t expect to miss her as much as I do. I don’t know why I didn’t expect that. I guess it was because 24/7 parenting of a child with such significant challenges is so overwhelming.

But now that she’s been in the hospital for 12 days, and even though we talk daily and I see her every other day, I truly miss her. I guess this is further evident that our attachment... more

“Why DO People distroy Animal Habitat?”

That’s what it says on the top of a picture LuLu drew today. She presented it to me with lots of pent up fervor about how animal habitats were being destroyed at an alarming rate and that as industries polluted waters and fish died, it also made the birds sick.

She went on to tell me all about the plastic rings of the six-pack containers choking birds and how people knock down all the trees. When I asked her what show she had been watching, she replied that she was reading about the birds and the water pollution in a book. SHE WAS... more

Check out this picture of my LuLu! It’s new to me; I just received it last night. We were at church for our usual Wednesday night events, when the new preschool director, a dear friend of mine, dropped this picture in my lap. She was cleaning out things at the preschool and found this picture from when LuLu was four. Apparently the proofs of this photo shoot were never sent home for the parents to order pictures.

LuLu’s first preschool experience was a good one, specifically because this woman who is now preschool director was her teacher. This woman,... more