Last Saturday, two days after Zion and I finally left Mary Bridge, we celebrated Maya's 10th birthday with a party at our house. The theme was "Fashionista!" The decorations rocked, the music was slammin', the food was abundant and delicious.

One by one Maya's friends showed up. Last to come were M. and her sister, and I was so happy to see them. All the girls sat and ate and talked about their summers so far. I tried to stay out of the way. I may feel young, but to them I'm ancient.

As I watched the girls interact with M., I saw how, when she did something odd, the girls would look at her and then look at each other, as if to say, "what's up with her?" At times M. would get up and start dancing to the music, completely in her own world.

After the girls finished making their hats and beach bags (what a disaster that was!) and it was time to have the runway walk and photo shoot, I noticed M. sneak into the house. When I found her she was curled up in the corner of the bathroom, completely naked, and hugging her knees. I guess she was overwhelmed. There were a lot of people and a lot going on.

I talked softly to M. and helped her put her clothes on, then walked her back to the party where I sat with her and asked her to hand out the treat bags. She did, and she seemed to be doing fine.

After M.'s mom came to get her, I reflected on the party and all that went wrong. I decided I had no business trying to do art projects before they've been fully researched and tested; I realized a ratio of one parent to fourteen 10-year-olds is asking for trouble; and I discovered that one person can take a little time to care for someone who needs a little more attention and direction, so they can participate like everyone else.

Yeah! We get to go home! The techie person came in to remove Zion's electrodes and now we're just waiting for the nurse and the paperwork. I can't wait to go home, take a shower and have a good, nutritious meal. That's what I get for not bringing real food, just healthy snacks. I ended up getting the cheapest (ha!) thing in the cafeteria, because I'm, uh, frugal, and it ended up being fried or just plain nasty. Of course, because the lights were on all night and the beds aren't ours, we didn't sleep well. But, I'm thankful for it all. We have great medical care and can pay the co-pays and other out of pocket expenses.

Zion's ready to go, too. He didn't like getting the electrodes taken off, because they poured a solution over his head since they're stuck on his head with glue, and some of it got in his eyes. But the neurologist came in, Dr. P.'s colleague, and said everything was going well and we should have some results pretty quickly.

So, as soon as we get some results I'll be posting them here. Thanks for coming along for the ride with me.

It was a rough night. I'm on this chair that folds into a bed - vinyl, I think, and since it's already hot in here, I dissolved into a pool of sweat and stuck to the chair/bed. Zion fared much better. He was worried about sleeping, since he's got all the electrodes stuck to his head, and a white gauzy thing covering all the electrodes, and still more gauze keeping the the wires together, and a fanny pack with some sort of electronic equipment. It does make it hard to get comfy. I resorted to bribery ... hmm, the promise of a Krispy Kreme should do it. And it did.

I first woke up at 4:15 this morning. Zion was fast asleep and the nurse, Ellie, was checking his

vitals. I went back to sleep and woke again at 6:30, determined to get a great cup of coffee. Ellie agreed to stay with Zion while I headed to the cafeteria. I came back with Tully's coffee and some hobo hash, and $4.15 lighter. Zion's breakfast doesn't come until eight, so I shared the hash and drank the coffee, feeling sad and missing my morning Starbucks Experience.

We should be able to leave later this afternoon. The morning shift of nurses have already come to introduce themselves and Kathleen, the student from Bates Technical College, is back, too. They're all fun and friendly and seem to enjoy Zion. Zion, of course, is staring at the TV and can barely be roused for a response. Nurse Lara checked Zion's vital signs and then the EEG machine. Sometime during the night one or more of the ledes came loose. (Ledes are the wires from Zion's head into the EEG equipment.) So the tech people will have to come up and check it out. If we don't get good data, we'll have to be here longer. We need 24 hours of good data.

Zion's breakfast finally came and now I can run down the hall to the family kitchen and get some more (substandard) coffee. Oh, I don't blame anybody, I know I'm rather picky. After that, I'll update the intake/output form, in which I record everything that goes into Zion and comes out of Zion. That last part isn't as fun as it sounds. :)

It's nearly 8:00 p.m. and all my good intentions have flown out the window. I'm terribly, terribly sleepy, and the jumping jacks and leg lifts haven't done a darn thing to wake me up. Only a trip to the hospital cafeteria, where I got an egg roll, a small scoop of rice and three chicken skewers for $5.18, woke me up long enough to consider that even ghastly hospital food has gone up in price thanks to our current administration. I can't wait until November. Can you say "get out the vote"?

That aside, the next shift of nurses have come on. Our 7 p.m. to 7 a.m. nurse is Ellie, and when she came to introduce herself I thought she looked familiar. Turns out she recognizes me, too: we're in the same spin class at the Y. It's great to see a familiar face.

I can tell Zion is bored, too. When we first got here, he said, "Life gives you great opportunities, and this is one of them." I don't think he feels that way anymore. Every five minutes he's asking for something to eat which means he's bored stiff. I feel his pain. I've been reading Their Eyes Were Watching God and posting on my blogs, but I really would just rather go to sleep.

I keep reminding myself that this is only a two-day process. Tomorrow evening we'll go home and we'll be glad we did this. Zion will regret not being waited on anymore, I will think wistfully back to the short amount of time where I didn't have to cook, clean, or even get up of my tail. And so far, having watched the data collected for six hours now, I see no signs of abnormal brain activity. Of course, only a neurologist can tell for sure, but I think things are looking pretty good.

Zion and I are hanging out at Mary Bridge in Tacoma, all settled in for his 24-hour, video-monitored EEG. The last time we were here, three days before Christmas in 2006, I was bored out of my skull: I brought books but they turned out to be terrible, and since the lights are always on and nurses are in and out several times an hour, it's impossible to sleep. Zion had a great time: He gets to be waited on since he can't go any further than the bathroom, which is four feet away, and they provide him with a Nintendo 64 and a monstrous TV plus bring his meals - he's in kid heaven.

This time, I got smart. I brought my laptop, several different kinds of books (Zora Neale Hurston's Their Eyes Were Watching God; John Medina's Brain Rules; and Tim Wise's White Like Me), lots of healthy snacks and my camera.

What we're looking for is to see if Zion is still having seizures. If he isn't, hopefully we'll be able

to get him off the meds. If he is, well, on to plan B. Not every kid grows out of his or her seizures, but 80% do. So we're pretty hopeful, and it's because of this hope that I'm trying not to be bored.

So here we go. We got here at 12:30, now it's nearly four. It took several hours to get checked in, to get the electrodes placed, for the camera to be trained on Zion, for the nurse to find the Nintendo 64. Zion is already saying he's bored; I'm sleepy and on to my second cup of coffee.

Stay tuned - I'll be posting throughout the process.

As I stated sometime back, I was less than satisfied at the results of Zion's re-evaluation. I knew the psych couldn't get much out of him the first day or two, yet she still used those results as accurate data in determining Zion's IQ score. Because I am a strong advocate for my child, because I simply couldn't allow this inaccurate information to be placed in Zion's permanent record, I allowed the district to use a different psych to redo the portions of the test in question.

This time, the results were more in line with what I expected. Oh, the data didn't show that Zion is a genius struggling to get out; there was no evidence that with the right curriculum or strategy or methodology that Zion would suddenly "get it." Nor did the new evaluation results show an IQ of 78, which is borderline. Don't ask me borderline what. You don't want to know. What the report did show is that Zion is struggling in many areas, processing being a primary concern. This, of course, we already know. But what I loved, is when the evaluation data were shared with me, the psych gave me feedback about how Zion responded to him, how he acted during the test; and, how when Zion was asked a question, a full ten seconds could go by before Zion responded, which left the psych wondering if Zion heard the question or was planning to respond at all. This information gave me a framework for what a good psych sees when evaluating Zion. Again, a major component of Zion's disability is the executive function piece, which, for him, is all about processing, memory, recall, and impulse control.

So, what now? We spend Wednesday and Thursday this week at Mary Bridge doing the EEG, and have a follow-up with Dr. P. We spend the summer with the tutor and working on reading and sight words and monitoring Zion's progress.

One step forward, one at a time.

My daughter Maya is planning her 10th birthday party. Because nobody has RSVP'd, (don't people know they have to do that??) I had Maya making calls today.

One woman I talked to, S., asked me outright, "Are you inviting both girls?" She wasn't rude, or even abrupt; she was pleasantly inquiring because in her world, only one of her daughters gets invited to parties and the other one is left out. Always.

You see, the older girl is a typically-developing little cutie. The slightly younger daughter has Down's Syndrome, and sometimes displays inappropriate behavior. It's not always easy to understand what she's saying, but she's charming and magnetic. Because both of my kids have been in after school care and summer camp with these girls, I've come to know them pretty well. And I have to say, I have a special fondness in my heart for M. She is sweet and innocent and loving and unfiltered. I'm crazy about her.

So when I hear that kids are being mean to her, or making fun of her, I have conversations with my kids about their responsibility, which is to be kind and help M., and also to defend her, because she can't defend herself in the way other kids can. Honestly, it pisses me off that kids are allowed to make fun of others, particularly those with disabilities. I would be equally pissed if it were Zion we're talking about, and believe me, he gets his (un)fair share of teasing, too, although he's starting to stand up for himself and tell people where to get off. Still, he recognizes when he's being left out and it hurts his feelings. I want to just scream, "Stop being nasty!"

I can only imagine what S. must feel like, as she's carting one daughter to a party, gift in hand, while M. sits at home with Daddy. I think parents have an obligation to teach kids that it isn't right to leave out kids who are different, and to set the example.

I told S., "Of course, both girls are invited! I wouldn't have it any other way!" And I wouldn't.

Ah, the first full week of summer vacation. I already feel more relaxed, and I know the kids do, too. Zion was even willing to read two short books for me last night. No grumpy attitude, no complaining, no excuses. I was happy.

Reading with Zion showed me two things. First, he's getting better at sounding out words. It doesn't take quite as long, especially when I point out the rule: "That's vowel consonant e, right?" and then he gets it, because he knows that the rule means the "e" makes the vowel say its name. The second thing I realized is that Zion is making progress. While his resource teacher said the progress was minimal, and I characterized it as not measurable, I can see that Zion is reading somewhat faster and definitely more confidently, and that means a lot.

I may even gather my own data this summer. That is, without telling Zion, record how long it takes Zion to read a set number of words, then over time, keep doing that same test and keep recording the time. That way I can determine for myself if his reading is improving in a way that actually is measurable. With that, I can keep track of the books he's reading. Fortunately, I have actual curriculum, so I know if he's reading at 1.1 (first grade, first month), or 2.3 (second grade, third month).

Also, next week we're going to Mary Bridge for a 24-hour video monitored EEG. I look forward to that, because if Zion isn't having seizures anymore, we can take him off his meds. Stay tuned for an update on that, and on, I can't believe I'm saying this, progress monitoring.

I was talking to my girlfriend, D., yesterday. I was sharing with her how frustrated I feel over Zion's friendship with Pierro. D. is a great mom, a poster child for Love and Logic, patient and kind to her children at all costs. Truly, she is amazing. I went on for quite some time about how Zion just got off of punishment and all technology privileges have been restored, and how I decided the friendship with Pierro was over.

D. didn't agree. She encouraged me to let Zion's friendship continue - where I can keep an eye on both of them - so that in this safe setting, Zion can learn how to do the right thing, even if someone around him is misbehaving.

Although I think that's a good idea, an idea that merits more thought, I had to laugh and remind D. that not too long ago, she was beside herself about not wanting her son to get hurt, or teased, or manipulated or controlled - ever. To that end, she severely limits his participation in activities she can't supervise.

That's part of what's good about my friendship with D. She gives me perspective, I offer her feedback. It's been healthy for both of us, to know there's another parent struggling with the same issues.

Still, I understand how D. feels. I just want to open Zion's brain and pour in, at least, an impulse that says, "No!" when confronted by a situation he knows is wrong. Obviously I can't do that. So I wait, and watch, and hope that this summer offers some growth for Zion in this area.

Tomorrow is the last day of school. I am so freaking happy about that, so excuse me while I do naked cartwheels. This school year has been a real trial. I know most working moms would agree with me: Commuting, working full time, and taking care of a family is exhausting. Add my commitment to my exercise plan and Zion's disability and there's hardly room to breathe.

What I find the hardest to accept is that there is so much more I wanted to do this year that I just couldn't/didn't/wouldn't make time for. You know, always making sure we did/checked/reviewed/practiced homework. That we went through backpacks every night. That I had weekly communication with my daughter's teacher. That I volunteered more in their classrooms.

If I'm being realistic, I'd say, when? When would I do those things? Given my schedule, it's practically impossible to cram another activity in. And as stressed as I have the tendency to be, nobody - nobody - wants me to stop exercising. It's the healthiest way to get out my frustration.

This summer, amid swimming and gymnastics and soccer and tutors and an abbreviated work schedule, I'll try to come up with a system so that I see the paper that flows in and out of the house, and I'm able to ensure homework gets done, and I'm in regular contact with teachers so I know if there's any missing assignments or whatever. I don't know what that system will look like, but I welcome any ideas if you have any. And should I come up with something that works, I'll be sure to pass it on.

Tonight we were going through Zion's backpack, cleaning out the remnants of his school year. I have to say, overall I'm less than satisfied at how the year went, but I'll talk about that later.

Zion tossed paper after paper onto my bedroom floor and I gathered a few things for his memory box (a booklet of haiku he'd written, the first report with legible handwriting). Suddenly Zion shouted out, "Mom! Finally!" I looked to see what he was talking about: A blue, sparkly invitation to a birthday party, taking place at a local skating rink. On May 3.

That's right, May 3. And today is Friday, June 13.

When Zion realized the party was long over, he was very upset. I was, too. I shared his sense of finally! because Zion, although he's been invited to parties in the neighborhood, an invitation has never come to him that wasn't primarily for his sister and he knows it.

So I tried to talk to him about it, but he's not ready. He said he's too depressed. And you know what, I blame myself mostly. I know Zion's backpack is a black hole, I've mentioned that before. So why don't I ensure that every single night I go through his backpack to make sure we don't miss anything important? I know, I know, I'm crazy busy. But look what he missed out on! He's not quite responsible enough yet, not developmentally capable quite yet, to do this himself. I have to stand in the gap, like I do for so many other things, so he doesn't miss out.

Today when I picked up the kids from after-school care, I noticed that Zion's shoes were untied and quite loose, barely hanging on to his oversized feet. Now, I was already irritated over the events of the day, and when I saw his shoes I had to do that self-talk: "Andrea, don't forget you love this boy."

With a week left in the school year, Zion has already destroyed three pairs of shoes. Yes, three. When we buy his shoes, we get two pairs the same size, because we know he will ruin them before he grows out of them. I don't know how he does it. In fact, I recommend he be studied, because he only wears them to school, he's got other shoes to play in, and yet his shoes look like they've been chewed by a tiger at the zoo. The laces, within a few days of being threaded, are frayed to exhaustion. We get notes from the OT asking to provide new laces so Zion can learn to tie his shoes. We look like parents who can't or won't buy our kid some decent shoes. Honestly, it really pisses me off.

It's one thing for a child to grow out of his shoes; that is not the case here. I've finally decided Zion just doesn't care. And you know what? Neither do I. That is, I don't care if he spends all night practicing tying his shoes correctly so they stay on his feet.

So that's what we're doing tonight. So far, he's had to put on his shoes and show me they're tied correctly, then take out the trash, then untie and take off his shoes and put them in their place by the front door. Wait two minutes. Put on the shoes, show me they're tied correctly, take out the recycling, untie and take off his shoes. Wash, rinse, repeat. And repeat again. Right now, he's getting his sister's dessert while she watches TV, and there's lots of things to do after that.

I wonder if I can get him to paint my toenails?

Today we took Zion to the neurologist. Every few months he sees Dr. P., a wonderful doctor who is knowledgeable, friendly, kind, and concerned. He said Zion's looking great, doing well. He recommended another 24-hour, video-monitored EEG. This is a painful process - for me, not for Zion - in which we go to Mary Bridge and spend a few hours getting checked in and set up, and once that's done, we spend 24 hours being monitored via video, audio, and EEG. Zion's confined to the bed; he can only get up to use the restroom. He's okay with that, since they bring in a huge TV and video games, and he gets all of his food and beverages brought to him. What a life! I'm confined, too ... to the room, which is full of equipment. Last time I brought books and little else and I nearly died from coffee withdrawal. I'll have to plan better this time. Food I can do without, but coffee? I don't think so.

Nevertheless, this is great news. Dr. P. says 80% of kids with seizures grow out of them, and he wants to check to see if Zion is one of the 80%. If everything looks good, we'll be able to take Zion off the medication.

Now, I don't know what effects this will have on Zion's brain. Will he suddenly process faster? Will he be able to focus more easily? Will everything click all of a sudden, and there will be no more learning disabilities, no more doctors or blood draws or IEP meetings or ... gulp ... blogs?

Mmm, not likely. Although, I remain hopeful. After all, I am Zion's mother. If I could make this all go away, I would. The one thing we know will go away is Zion's insatiable appetite. This medication that he's on works very well with few side effects, but the one he does have - a constant need to eat - is not good for him. I give him lots of healthy snacks but still. Enough, already.

So, wish us luck. We'll be doing this process in the next week or two or three, depending on when I can take a few days off work. I'll keep you posted.

Yesterday I picked up Zion from his friend Pierro's house right up the street. I was going to the grocery store. Zion asked if Pierro could join us, and since his mom agreed, I did too. In the car I set forth the rules: Everybody stays with me, keep your voices and bodies quiet, and don't ask for anything 'cause you're not getting anything.

Halfway through the shopping, Zion said he had to use the restroom. I looked at him and instantly I thought, he's lying. So I told him he'd have to wait until he got home, and he said, "No, really mom. I gotta go." So I let him go.

While we were in the checkout line, the manager approached me and said, "Is this one yours?" He was talking about Pierro. Turns out Pierro had a magazine stuffed up his shirt, arms crossed over it, but he'd been caught. Pierro lied and said he didn't have anything, but I made him drop his arms and I pulled the magazine out from under his yellow jersey. I told the manager to get security so that we could demonstrate to Pierro what a serious matter this is. By this time, Zion comes out of the restroom. With one look at him I knew he had a hand in what Pierro was doing. He admitted he knew Pierro was going to do it.

I took Pierro home and stopped in to have a conversation with his mother. Then I took Zion home and took his TV, PlayStation II and Nintendo DS out of his room. A bit later, after his dad and I were sufficiently calm to have a conversation with Zion, we explained that it's not enough to know right from wrong. You have to DO the right thing. No matter what! And not telling when he knew Pierro was doing something bad makes him just as guilty. We told him that as he gets older, if something like that happened the police could be called and he would go to juvenile hall because he was with Pierro.

Pierro has done some really terrible things, some of which I've chronicled here and some of which I haven't. What gets to me about all of these things is that Zion follows Pierro and by being in proximity to the poor behavior and not leaving and not telling an adult, he is just as guilty. Add to the fact that as a young black male he already will be considered a menace to society, and we just can't, and won't, take the risk.

Even though we really want Zion to have friends, and we understand the importance of developing and maintaining friendships, I would rather Zion had no friends than have friends who misbehave to this extent.

Later that evening, Pierro and his mother came by to talk about what happened. She was very apologetic; Pierro was crying. I sat Pierro down on my lap and had the same conversation with him that I had with Zion. Pierro's mother, M., told me in no uncertain terms that next time she'd call the police herself so Pierro would realize he couldn't do that. We all talked for a while and then they went home.

I really wish Zion was more of a leader, less of a follower. Until we have confidence that he can do the right thing no matter what people are doing around him, we're going to have to be extra vigilant about his relationships.

Last week I got a letter from the district office, a formal notice indicating a reevaluation for Zion was being requested. Because we just did an evaluation for Zion, I was confused, thought perhaps it was a mistake.

It wasn't. The school psych (who, by the way, does not inspire confidence) has asked for this reevaluation because we're considering placing Zion in the adjustment program next year.

So here's the thing. When I got someone from the district office on the line, I had a tough time being polite and kind and understanding. In fact, I was so irritated I asked to speak to anyone who was available, instead of waiting for someone on my team to call me back. As politely as I could, I expressed my incredulity at the school psych's nerve to ask for this when the original eval was dated January 25 and I didn't even receive it until May. Further, I had already stated to the IEP team that I had deep concerns about the integrity of the evaluation's results, because for the first day or two, Zion refused to perform. It wasn't until I spoke to him and told him to shape up that she was able to actually test him and have him respond. However, she used the data from those unresponsive days to determine his IQ and gauge other cognitive abilities. Another part of the testing was done by a speech-language pathologist who got a better response from Zion, thus her results disagree with the psych's. There's no way I can consider this evaluation valid, and since this is a part of Zion's permanent record, I had to respond to it in writing.

Fortunately, I have enough confidence in the district and Zion's IEP team to trust their decision-making ability. They've asked to do certain parts of the evaluation again, this time using a different psychologist, one who knows Zion and can get him to perform. I think this is a great alternative, one I am willing to sign off on.

What this whole situation makes me realize is how lucky I am to have a great district to work with. This psych is out of the norm; I've never felt like there was someone on the team I didn't believe in. Hopefully by the end of the school year we'll have accurate data and be able to develop a program for Zion for next year.