No school today for the kids. This morning E-Niner has behavior therapy. Then we’re going to visit one of my best friends from high school with whom I reconnected in the past couple of weeks. Turns out her oldest daughter has some pretty major gut issues — colitis, Celiac, something else. She got in touch with me because, through the grapevine, she had heard about E-Niner’s psychological issues. It never ceases to amaze me how raising a child with special needs creates an instant bond with other parents going through the same thing. l wonder if it’s because we really feel that connected, or if it’s because we feel that misunderstood everywhere else…

E-Niner has been having some very rough, violent psychological breakdowns again. They’ve been happening now for the past month, and we aren’t seeing much relief.

After tonight’s hour and a half special, Joe and I talked with E-Niner’s psychiatrist about admitting E-Niner to inpatient hospitalization (24 hours a day). Over the summer E-Niner was in outpatient hospitalization, which was all well and good, except that they never witnessed how hard the evenings and mornings go.

E-Niner is not on Ritalin during the morning and evening, and he is not only physically hyperactive, but he is emotionally unstable. He can become violently angry when things aren’t in his full control.

So that’s the deal. The psychiatrist said he was sorry that we were so matter-of-fact about the whole thing. Of course he wishes for E-Niner and for us that things would be different, but he also supports the decision. Tomorrow I’m hopping on the phone to make some calls.

…found out that my bad cholesterol is bad,

endured with E-Niner one of his psychological breakdowns,

been bitten by E-Niner during said breakdown,

have contemplated again his need for attending a residential treatment facility,

worked myself into a panic attack about the potential severity of a human bite (I was warned by the psychiatrist again today that it is considered a medical emergency and next time I need to call my doctor right away and possibly go to the E.R.),

felt deeply concerned about E-Niner’s psychological well-being now and in the immediate future,

had a pretty horrible night’s sleep,

accidentally run a red light since my mind has been off in never-never land,

downed olive oil to the point that it has made me feel ill in the hopes of quelling my cholesterol,

come to the understanding with E-Niner’s OT that he needs more psychological support before he can continue with sessions with her — his anxiety has pretty much halted him from participating in any activities there,

and felt very thankful to have my sister.

The past 48 hours have included such elements as a lazy old dog, a broken down car, an emergency call to the psychiatrist, a second round of IEP tests for E-Niner, and dinner with a dear friend — not necessarily in that order.

E-Niner has yet a new prescription medication. Clonidine. To be taken when he’s in a complete psychological breakdown, like what happened yesterday when he trashed our foyer.

He had IEP testing in the morning. (“He’s so smart!” said the examiners. I’m getting the idea he is smart.) When we got back to the car (illegally parked in front of our primarily low-income, neighborhood, soon-to-be shut-down Chicago Public School to make way for rich kids to have their own junior high), my tire light was on.

So I did what any driver who has gone to driving school five times in the past eight years (who? moi? oh, shut up. I drive. a lot!) would do — I drove myself to the trusty 50 cent air machine at our nearby gas station and pumped the tires with air.

Problem being that the 50 cent air machine usually has a tire pressure gauge on it. This is why I break out the quarters and actually pay for air. It’s kind of a nifty contraption. You can check tire pressure while you fill, so I’m always sure to keep my treads at a comforting 35 pounds.

As you can probably guess where I’m going with this, the tire pressure gauge was broken. So I winged it. I worked on one side of the car and then I stopped. Too snowy, dirty, icky, gross. Plus, I have a 50 percent shot that I licked the issue.

Fate would have it that I picked the wrong tires to fill. So instead of going back out in the cold, yucky wet, I drove to our local car repair shop.

The guy there checked my tires and said that my front left had over 40 pounds of air in it! (Hey, when I fill, I fill.) So he let air out of that, and put air in the ones that needed it. Nice. Hunky, dory. Right?

Wrong-o. Because then the car wouldn’t start. It just sort of clicked around and wouldn’t vroom. Luckily, I was at a car repair shop. They jumped it, checked the engine, and determined that my alternator was shot.

Remember? E-Niner is in the car with me. Key point.

So I determine that since the garage is only five blocks from home, I’d leave the car with them and walk back.

As E-Niner and I waited in the smokey office, last touched with any type of cleaning product circa 1952 and still smelling heavy with nicotine and gasoline fumes, we spied a very old, very tired Golden Retriever. He was balled-up next to the cinder block wall underneath a staircase, laying on a plaid dog bed, behind a gate. I felt bad for him, wondering if all these years he’s just sat under those stairs inhaling the noxious fumes.

Anyway, E-Niner (dog phobic) spied the pooch and proceeded to get anxious about the situation. He kept imagining the dog jumping out from behind the gate to “get him.” I couldn’t get through my paperwork fast enough with the service guy.

I’m pretty sympathetic to E-Niner’s plight. I’m not that bad, but I’m scared of dogs until I get to know them. Then I’m only just jumpy.

Back to the story at hand and not my own personal psychological trauma, the change of plan (walking home) plus the anxiety about the dog was enough to set E-Niner off. And when I say off, I mean ballistic.

We walked out of the gas station, and no more than five feet off the premises, the kid drops one of his toys in the snow. Toy has snow all over it. E-Niner doesn’t have gloves on. His hands are cold. I wipe off the snow, put on his gloves. E-Niner can’t now feel the toy in his hand…let the games begin!

As we walk home, he yells at the top of his lungs that he hates his gloves. He keeps dropping his toy — on accident or on purpose? I can’t tell. “I hate my gloves! I want to go home! I keep dropping my toy! AGGGGGHGHGHGHG!” Like that. For the first two and a half blocks.

At exactly the mid-point, he chucks one of his toys into a fresh snow bank so that it sinks quickly to the bottom of about three feet of snow. We can’t find the toy. If he hadn’t lost it before, he loses it now. For good. I’m kicking snow around trying to find his toy. He’s hitting me on the arm, hanging on me, telling me to stop burying his toy more.

I wonder to myself if it is worth it even trying to find it or if we should just move on. Finally. Finally! I find it. I think this is good. We have what he wants. We can walk home now.

So we start off. He stays back a few steps, and charges at me from behind, pushing me like I’m one of those big pads football players push down a field at practice. He does it again and again and again.

I don’t know where to turn. Ahead of me is a set of busy commuter train tracks. To my right is a busy street. Behind me is a child that has lost it. I can’t stop and give him a time out. First, he probably was in no shape to comply, second it was cold, and third I would much rather be dealing with this in the safety of my own home.

So I plodded on ahead, either bracing myself for a 50 pound bump every few steps or grabbing him when I thought it was appropriate.

At home — finally, finally! — is when he trashed the foyer. He came straight inside the house and started flinging boots and bags everywhere. I couldn’t stop him and wasn’t always fast enough to catch him. He slammed a clay vase full of dried eucalyptus leaves against our glass door, thankfully breaking the vase and not the door. There were plant leaves everywhere!

I tried doing the therapeutic hold I was taught — wrapping his arms around his torso — like a human-held straight jacket. The kid is too strong for me, though. He kept slamming me against a wall.

I let him go, and he lunged at me — swinging, hitting, screaming. I pinned him to the ground, pleading with him to stop destroying our house and hurting me. He would cry uncle, I would let him go, and the cycle would start again.

Thankfully, our babysitter was there with T783. I love our babysitter. She’s prompt, responsible and also in a combined Masters/Ph.D. program in psychology. I love her, but she loves us too. We’re her reliable term paper for every class.

She tried to talk E-Niner down, and it was working. But he still just couldn’t keep it together to comply with her request of putting what remained of the vase back on the table. While she was with him, I called Joe who rushed home from work and the psychiatrist, who called me back within moments.

I went back downstairs and hauled 50 pounds of fighting boy up three flights of townhome stairs to his bedroom and told him to stay there until Joe got home. I shut the door, only to hear the two hard things in his room — a baby monitor and sound machine — get whipped against his bedroom walls.

Joe only works ten minutes away, so he was there pretty quickly. Our babysitter’s stint for the day was done; she left for class. And within that same moment the psychiatrist called me back. Over the phone, he prescribed Clonidine. He said we are to give it to E-Niner when he’s in an all-out unreachable rage, as he was today. Clonidine and a mini-dose of Seroquel (the anti-psychotic sedative that E-Niner already takes four times a day).

So. When that was all done — only 11:30 AM, with eight more hours before E-Niner’s bedtime — I was beat and beat-up. My sister came over to support me and help. I can’t tell you how blessed I am to have such a wonderful, caring sister. I don’t know what I would do without her.

The rest of the day, I nursed an extraordinary migraine, which is why, when my good friend e-mailed about a spur-of-the-moment dinner, I accepted.

My friend is also raising a child with special needs, so she and I have that bond.

After telling her about the day that kicked my ass to Jupiter and back, and listening to the details of her child’s meltdowns for the week, we made a decision. Truth be told, she came up with the idea.

She said, “Let’s pick one thing we’re going to do this week for ourselves. One thing. We have to say it to each other, and then we have to do it. You first.”

Do you know how hard it was for me to come up with something? I floundered. Flappy floundering. But we both managed to set a goal. I ended the day on a positive, so that was nice.

Want to see how positive? Here’s the picture she took when we left:

endswith8741 ends on a positive

Joe told me that as we drove on Sheridan Road, rounding the corner past Loyola University, where the road meets Devon Avenue.

It was before E-Niner had any type of diagnosis. It was before I wanted to believe that there was anything remotely the matter with my beautiful baby.

The words came out of Joe’s mouth, and I was pissed. “Don’t say that! He doesn’t have special needs!”

“Most kids his age can already [insert lagging developmental milestone now faded from my memory here].”

“So he just needs extra help,” I rationalized.

“Like I said: special needs.”

I sat in the car, arms crossed, in disbelief that my husband — the only person in the world who made “our” son plural with me — could say something so, so not true.

It was about a year before I swallowed the special needs pill.

During the course of that year, I stole glances at the Special Needs section of the bookstore. It was as if that section were a bookstore strip joint, and I would catch cooties from it just from looking.

In the same way that a strip joint does tempt curiosity, though, I would find myself quickly glancing at titles. Something about dyslexia here, what to do if your kid can’t talk there.

My son was not “special needs.” (This was before I learned that referring to someone as their label is more than not politically correct, it ignored their humanity entirely.) I surmised he could probably read just fine one day. And can we say motor mouth? These were not my problems.

Fast forward a few months to his sensory processing disorder diagnosis. Looking to find out more about the condition, I headed back to the bookstore — to that dreaded Special Needs section. And there they were. Books upon books upon books about sensory processing disorder. It’s been my section ever since.

I check back every now and again to see if there’s any information I could possibly be missing, that I haven’t yet ferociously uncovered in my undying quest for Answers.

It’s a puny section, Special Needs. For how many people out there are raising kids with them, it seems like it should at least take up half a row. Not at my bookstore. It’s area is about three feet wide. That’s it.

As I looked at the titles today — carefully reading every one, since there weren’t too many to peruse — I’d guesstimate that fifty percent of the titles were devoted to autism spectrum issues, a quarter on ADHD, a handful on bipolar and anxiety, and the rest were personal accounts of what it is like living with or parenting someone with special needs.

But where was the book on childhood psychosis? That’s what I was looking for. Not there. And then I realized my frustration.

E-Niner’s got special needs in spades — the more popular ones like SPD, ADHD and, some professionals believe, PDD-NOS — but he’s also got this rare condition that puts him in a class beyond the norm. Psychotic episodes. They don’t have special needs books on that in my bookstore. And in all of my research and connecting with other people, I haven’t found another peer who has it.

I know plenty of kids with PDD-NOS, ADHD, SPD, anxiety — all issues that E-Niner has. But I haven’t met one child with psychosis. In my hungry search last year, I went straight to the National Institutes of Mental Health. They were flabbergasted that I would even speak of such a thing about a four year old. They didn’t know of anyone either. They also suggested I get second opinions.

But time has run its course. And we have had second opinions and thirds, and a neuropsych evaluation to boot. I just want to find out more about this condition. Though, I’m not sure what more it is I need to know. I’ve lived with it — lived through it with him — every day. It sucks.

So here’s my plea. If you know of anybody out there — any child out there — who has psychosis, can you send their parents my way? I’d love to trade notes sometime. If only to feel less isolated.

It’s not often that I feel absolutely awesome about E-Niner. It’s not often I feel like the world is his oyster, so I’m going to let every last little bit of my pride for him today creep deep within my bones and let it marinate…and then let it explode!

He did his first round of IEP tests today — an academic exam — and he rocked it.

Even though he was initially scared and wanted to hide behind me, he was able to use his words and tell the psychologist that he was feeling shy. She told him she could understand why, but not to worry. They were going to have fun!

She administered the whole test in one sitting.

Let’s clarify. For E-Niner “sitting” means fidgeting, jumping, falling on the floor, going under the table a few times, kneeling every now and then, sitting with his chair pushed as far back as possible, laying his head on the table and letting some drool hang out (just a bit, until he realized it, sat up and wiped his face), interrupting the test to ask her why her hair is straight or why the sky has clouds. But he did it!!!!!!!!!!! The whole test! YES.

And — I just picked up an e-mail from the psychologist who said, and I quote:

“He did a really great job with me!  I was really impressed with his knowledge base.”

You know what? I am going to “read into” every last word of what she wrote, because damn it, it’s not often I get encouraging news about E-Niner.

She said she was impressed! Impressed! See? He is impressive. He can be impressive. There is a whole nugget of beautiful wonderful behind all his other garbage.

I’m impressed too, because frankly, I haven’t taught him a lick of anything. I haven’t taught him his letters or numbers or how to count. Nothing. I spend all my time teaching him how to act appropriately in social and emotional situations.

So with absolutely no education at all, my boy still tests at an impressive level for his age. Could you imagine how he would do if he actually were able to study and learn?

I am so proud of him. So proud.

Boredom took me to the bargain book table in the children’s section of Barnes & Noble today, but destiny led me to her: an Irish woman who was old enough to be my mother, also named 8741, who married outside her race (Arab) and works in a therapeutic school and who raised (and still is raising) her adult emotionally disturbed son.

As I combed through the shelves for a book about T783’s new favorite topic, Pinocchio, she warned me, “Be careful that he doesn’t get obsessed.”

That was a strange thing to say, I thought — a strange thing to say about my typical kid T783 but something right on the money to say about a kid like E-Niner.

Our conversation meandered from Pinocchio to the topic of race — how none of her kids look like her either — and then to special needs. “I think I’d like to adopt a child with special needs,” she said.

I’m sure I looked at her with a face that yelled out “Why the hell would you want to do that? You have no idea.” But my outside voice said, “Interesting you say that. My older son does have special needs — but not physical ones.”

And that’s where two kindred spirits collided.

“Do you walk on eggshells around him?” she asked.

“I used to,” I said. “I could. But I don’t. Not anymore. I’ve decided that no matter how violent he gets, he needs to know that I am in charge.”

She looked impressed. I sounded impressive, but then added, “Though that doesn’t mean I don’t get absolutely frustrated and utterly exhausted. I’m not saying it’s fun or easy.”

“Oh, I know it’s not easy,” she said. “I work at a special needs school with all sorts of kids. In fact I’m here here today because one of the kids with autism knocked me on my butt and I can’t go back to work until my tailbone heals.”

She told me all about the school where she works — which could potentially be a place E-Niner could attend. She told me about the types of kids who go — many with physical disabilities, many others with emotional disturbances.

I explained to her that what is so difficult for me is that E-Niner’s issues are not apparent on first glance. He looks like a normal boy. When people treat him like a typical kid and he doesn’t respond in a typical way, people don’t get it. Sometimes they even get a little offended.

And then she started telling me about her son.

He was infatuated with The Little Mermaid when he was young — obsessed. He decided that he wanted to be a merboy and marry Ariel. His whole life became the The Little Mermaid movie, and everyone he encountered had a part. He pretended this story for three years.

I told her how my son has converted his family and environment to suit the Disney flick of the day — Chicken Little, Cars, Wall-E. How when he’s Wall-E, our house is “earth;” our car is the spaceship; how Joe is M-O (the robot that constantly cleans — a fitting analogy).

“I don’t want to alarm you,” she said, “but we came to find out my son is schizophrenic.”

And do you know what I said to her, totally off the cuff?

“Oh, don’t worry. I’m not alarmed. We’ve been told that E-Niner has psychotic episodes. So that whole business is nothing new to me.” That is what my outside voice said.

My inside voice was all, “What the fuck you talking about, woman? Don’t worry? You’re not worried in the slightest that a whole slew of psychotherapists think your boy has psychotic episodes? Speaking of psychotic, what kind of psycho bookstore conversation are you having right now? ‘Can you hand me that 50 percent off Frosty the Snowman book, and did you find Seroquel or Risperdal more helpful anti-psychotic meds?’”

All the while, while my insides were freaking out, I realized that this woman has been in my shoes exactly. I’ll bet she’s freaked out hearing the things come out of her mouth before too. I’ll bet there was a time in her life when she’s told some random (and seemingly empathetic) stranger that her son had psychotic episodes, and later had trouble digesting it.

Here is a mother — finally someone — who I can relate to. I have been searching and searching for a person who’s been there, done that, and here I met her in the bargain section at Barnes & Noble. And not only does her adult son have special needs, but she works at a therapeutic school, and she’s had to deal with raising a multi-racial family.

I felt like she was me fast-forwarded thirty years. And look! She survived! And look again! She works in a therapeutic school — she still wants to help! And look some more! She wants to adopt a special needs child. Wants to. Even when her own schizophrenic son is living with her at home. Holy baloney, people survive what I’m going through!

I’ve seen the future. It ain’t so bad…and I have Destiny to thank for it.

On the heels of nearly completely forgetting that yesterday was New Year’s Eve, I decided that New Year’s is a crock. A new day in a string of days that make up a lifetime. We don’t get all giddy about it turning a new month every month or even a new week or new day or new hour or new decade, what’s so special about a year?

I’m not getting it, and it’s not been too happy: so far, I’ve gotten into blow-outs with every single member of my family today.

Seriously, folks, I’ve had it. HAD it. I feel like I spend all day long roping in kids, and this morning, for once, it looked like I was going to get a peaceful morning. The kids were wrapped up watching The Polar Express; Joe was making pancakes. I thought we could continue like this at least through breakfast. Why not?

It’s because I put expectations on it that it all went down the crapper.

Ever hear of transference? It’s this doozy of a psychological term (dang I’ve been in therapy a long time) that is a fancy way of saying “taking something out on somebody.” We do it all the time, every day, always, always. You react a certain way to a certain situation not only because of the situation but also because of a history you’ve had with situations like it.

Well, like I said, I had it with the boys — and when E-Niner couldn’t sit still at breakfast (never can, what was I thinking?) after I asked him and bribed him and motivated him for the bazillionth time, all the while hearing Joe discipline T783 for hitting me because T783 was trying to get out of eating breakfast by crawling on my chair (which, when I tried to stop him, he hit me), in addition to having a TV commercial blaring in the background for some belly bulger on sale for $19.95 I. lost. it.

I’ve been stewing for a while (geez, ya think?) about E-Niner’s issues and why such an innocent little boy could be hit with so many awful things and how it is possible that we can do and are willing to do anything in the world to help him, but things still aren’t better (though they aren’t worse either), and I took my anger with his situation on him. Yelling, screaming, asking why he couldn’t just sit still and eat breakfast for once, just once.

Then I took it out on T783 for hitting me. Then Joe got mad at me since I was obviously way over-reacting to E-Niner’s tap dancing with pancake, which is when Joe suggested that he does a better job with the kids than I do, I told him to go ahead and do it. I’ll happily go to work. Happily. Can I be clearer on that?

This is totally not the family life I imagined. This is not how I imagined being a mother, a wife, a person. I was never a raging lunatic on the verge of an angry outburst or tears galore. I used to be this calm, quiet person who minded her own business and went about her day. In fact everywhere I could, I would try to keep the peace, not stir things up! I don’t like being an angry witch woman, but it’s who I’ve become.

I went upstairs and dreamed of disappearing, of moving to sunny California by myself and changing my name, of scraping together extra money here and there to use to buy an apartment and start leading a double life where at least I have an ounce of control over what happens in a day, of getting in my car and just simply driving, of hiring someone to fake-kidnap me for a week while I spent the time in a far-away spa. I liked the fake-kidnapping the best. Anything with a spa.

Then I thought if I were really a good screenwriter, any one of these would make an entertaining story. Then I remembered that this is real life and that I am way too responsible to do any of these things. And then I thought that perhaps this is my problem.

I feel way too responsible. Some things about our family’s issues aren’t my fault. And some things, I just can’t fix no matter how hard I try. I’m going to need to learn to accept some things, but how on earth do you go about doing that?

I don’t want to accept that my kid has profound special needs. I have higher hopes for him than that!! I don’t want to accept that my family can’t one day just be normal and do normal things like wake up in the morning and not have it be World War III or even minor battles on the fronts like Eating and Sitting Still and Chewing Your Food!!

I feel like if I accept these things that it means I’m giving in. Giving up. I don’t want to give up. I can’t give up. I refuse to give up on my son. I don’t know what else to do or where else to turn. But I am not going to let things turn out like this.

So instead, I will continue to plod along this God-forsaken course hoping that at some point, somehow, something will give around here and change for the better. In the words of my esteemed Governor, happy bleepin’ new year.

—-

I’m closing comments on this one. This isn’t a pity party.

Today Babysitter8741 and I took the kids to Chicago’s Museum of Science and Industry. Haven’t been there in years — since E-Niner was two and I realized it was way overstimulating for him. Figured we had nothing going on — at the worst, we’d leave — and I’d give it a whirl.

Plus, for Christmas E-Niner got what has been dubbed The Silver Train which was purchased from the gift shop of the Museum, and T783 has been jealous ever since. I figured when we were done, I could pop by and get another train to stop the constant bickering the in the house.

Long story short, T783 managed to have a meltdown inside the museum. E-Niner did awesome while we were there, and then proceeded to meltdown in the car on the way home.

Backstory, T783 has become infatuated with the Polar Express movie ever since I recorded it last week. You know the Polar Express movie — the one where the train pulls right up to the window of the little boy, who is on the verge of failing to believe in Santa Claus, and takes him straight to see the big man himself.

Every night since that movie, T783 has looked out the window several if not a dozen times trying to find that train to whisk him away. (Hm…can we say chaotic, stressful home life??)

When we got to the train section of the museum today, they had a real (but disabled) steam locomotive. You can stand where the fireman stands — between the coal hopper and the firebox — and pretend to shovel coal. The firebox is lit as though there is a live fire in it. Very realistic. Perhaps a bit too realistic for T783.

At some point, he had taken over the small space and as people entered, he would shout to them, “Welcome to the Polar Express!” Cute. The first time. I left T783 there with Babysitter8741 so E-Niner and I could keep exploring.

After half an hour I got a phone call. “We gotta go,” said Babysitter8741. “T783 has lost it.”

Apparently T783 had become more and more possessive over his small space (no, they had never left it!), and proceeded to deck a little kid who wouldn’t move over. When Babysitter8741 removed him from the situation and gave him sitting minutes in an out-of-the-way place, T783 managed to chuck his toy tractor into the crowds, nearly hitting another kid.

So. E-Niner and I caught up with the hooligan (who was still screaming and carrying-on) and we proceeded to make our way out of the museum.

Only E-Niner couldn’t handle T783 being upset, and E-Niner started to gear up for a little meltdown himself. (One of the things we learned from E-Niner’s neuropsych exam is that he has trouble separating himself from others, which I think is what was happening here. E-Niner couldn’t decide if he was the kid who was upset or not.)

Which is when I totally pulled out all the Mommy Stops and said that if the two of them could get themselves together and behave by the time we reached the gift shop (which honestly seemed light-years away from where we were — at least three staircases, one of them giant), I would still get them The Silver Train I promised them when we arrived.

This was enough to snap the kids in shape.

We were able to walk to the gift shop without a hitch. Though, I could tell that E-Niner was getting apprehensive. As we walked down the tallest staircase that overlooks the enormous lobby now full of people standing in line for tickets, E-Niner kept telling me it was “too loud,” “too crowded,” “too many people,” “too many eyes looking at me.”

He was working himself into a little anxiety spin. Wonder where he gets that from? (By the way, I’ve just started new meds for that. ‘Nother post, ‘nother time.)

We made it through the gift shop just fine. Amazing how a shiny toy train can motivate. E-Niner got his right away since he did a great job in the museum. T783 had to do an additional step of following directions and holding hands through the parking garage — and behaving — before he could get his.

So. We were all strapped in the car. T783, train in hand. I thought all was right with the world. Apparently, not so.

E-Niner kept it together inside the museum and let out his over-stimulated sensory overload in the car on the drive home. The artificial trigger is that he dropped his Tinkertoy on the ground and couldn’t reach it (and neither could I), which degenerated into a kicking, screaming, throwing escapade.

I managed to get home before all-out warfare, so luckily none of us had to suffer through his own suffering. The great thing about having E-Niner in a car seat when he has his breakdowns is that he’s safe (strapped in with a 5-point harness) and you can close the doors of the car and not have to hear it as much.

So he tantrumed in there for a good half an hour. I would check on him frequently to see if he was done. And then when he was finally calm enough for me to say more than, “Are you done,” I asked him if he was really mad about his toys or if he was mad because his body felt yucky.

His eyes lit up, like I just put words to what he was feeling. “My body felt yucky.”

“From the museum?” I asked.

“Yeah. From all the people and the crowds. It was way too crowded for me.”

Then I went through the whole “I’m glad you told me that, we don’t have to go there again if you don’t want to, you need to pick a better way to be angry that doesn’t involve jeopardy to others or property, plus now you owe me a stiff drink so I suggest you start boning up on martini concoctions” litany. And magically, it was better.

I’m going to have to pull out the Yucky Body card more often. I think it happens to him more than I realize, and it seems like putting a name to it helped him a lot.

I often wonder if all my worry for E-Niner will one day kill me? I have a string of worries that tie up in a tight, knotted ball that I have nothing else to do but keep winding up all the worry. Will it one day do me in?

(It won’t, by the way — even if it sometimes feels like it. I read some study recently that concluded that parents who raise kids with special needs don’t die any earlier or later than parents raising typical kids.)

When we adopted E-Niner, we said that God brought us to him. E-Niner was and is a gift from God. But I also have begun to wonder that if E-Niner is the gift, are his special needs our burden? Our cross to bear?

One good thing about having a family member “in the business,” is that we can do Home Mass, which is what we did for Christmas this year. Joe’s father is an episcopal priest, and instead of trying to coordinate the kids and the church schedule and the cooking and the napping (very important on holidays!), we decided to do Mass around our dining room table.

Instead of doing a homily, for Home Mass we all discuss what the readings mean to us and how they touch our lives individually. I can’t recall my train of thought now — and this was definitely an inside thought — but at one time I do remember saying to myself that being dead, in the Lord’s care, will one day feel quite the blessing. My earthly burdens will be no more. And for a moment, I felt lighter.

Even if there were no life after death (an option I think we’re all forced to at least consider), I thought, the emptiness would still feel lighter than what exists now.

These thoughts have scared me. I’ve never considered death like this. I usually fight off the idea of it. But I’ve started kind of embracing it now or accepting it in a new way.

I don’t feel depressed or suicidal, so please don’t jump to that conclusion. But I do feel kind of at peace with the idea. More than I have in my life. My desire to deny the inevitable has dwindled to nearly nothing, and it just kind of feels weird.

Part of life is coming to terms with our own eventual demise, and somehow, this Christmas Eve, I gained a little more peace where that is concerned.