To Martin, on Christmas

Martin, my love, my bunny rabbit, happy Christmas.

It’s been nearly four years since we began biomedical interventions to help you regain your health. If you read this one day, I thought you might like to know how Christmas 2014 looked.

This was the first season that you took an interest in Santa. Daddy and I have never done much to talk up Santa at home, so I’m not sure where you caught the faith. But you did. Since mid-December you’ve implored me to text Santa your holiday wishes, continuously, as they sprang from your head. I had to change Daddy’s contact information in my iPhone to “Santa Claus,” because with each outgoing text you inspected the screen to confirm that Santa would receive the message:

Santa Claus, Martin wants me to tell you that he did very well and played games today.

He would like you to bring him a Knuffle Bunny for Christmas.

Santa, Martin would also like Rudolph.

And a golf club and a golf ball.

And a calendar for January.

Santa, Martin finished all his soup!

I may never erase those text messages.

You approved the idea of lighting a fire to warm up the chimney for Santa, and you agreed that we should leave him a snack. I have to apologize: I forgot to leave a snack last night. This morning, when I saw you headed toward the family room, I grabbed a clean plate and a couple orange rinds from the counter, beat you to the fireplace, and claimed they were evidence of a snack consumed by Santa. Forgive me that! Know that I tried to hum your Santa vibe 100%, until you asked, “Will Santa come into my bedroom and give me kisses?” That was creepy.

You received pretty standard kid-presents. A lot of books. That Knuffle Bunny you asked for, along with a stuffed Paddington. A solar-system wall chart for your bedroom. Daddy bought you a fancy sweater; he’s that way. A family friend gave you a telescope! We can’t wait to assemble that.

I was a disappointed that you didn’t show much enthusiasm opening presents, or for the Rudolf-the-red-nosed-reindeer breakfast I made you. That being said, it didn’t take long to track the pathology of your indifference. Halfway through breakfast, you asked to “take a break” on the couch. Soon after that, you developed a fever, and snot streamed over your mouth and chin. You were sick, sick, sick. You are sick, sick, sick, with a fever and everything. That might not excite all parents. For us, remember that we passed years wherein your body never managed the healing reaction of a fever. In 2014 we’ve welcomed three or four fevers.

Our friend Edwina came for Christmas supper. I made everyone’s meal GAPS-compatible (with the addition of quinoa): deviled eggs and peanuts as hors d’oeuvres, then quinoa-vegetable stuffing, kale salad with cranberries and homemade dressing, salmon, mashed cauliflower, hazelnut-zucchini bread, and chocolate-avocado pudding, berries, chocolate chunks, and my own meringue cookies for dessert. A fat lot of good all that effort did: You weren’t well enough even to come to the table, let alone eat. At least Daddy and Edwina enjoyed the food.

The feast we had without you.

The feast we had without you.

We used “FaceTime” to talk with your family in South America and across the United States. Your sickly participation, though lethargic, was good-natured. Throughout the day I texted your U.S. grandparents and your uncles bulletins on your condition. I was worried that, having slept so much of the afternoon on the couch, you might not be able to fall asleep tonight. Your Uncle Rudy, from California, told the whole family that he was sure you would fall asleep fine. It’s nearly midnight now, and you’re still awake. Plainly, your Uncle Rudy is not a reliable predictor of these things.

You were supposed to go to the local Jewish Community Center tomorrow (Friday), for an all-day social program. That would have given me a lot of time to prepare to leave 7:00 am Saturday for Florida. Unless you make a miraculous recovery over the next eight hours, I’ll keep you home tomorrow; Saturday morning—please may you feel better by then—we’ll embark less than ready. Don’t feel bad. It’s not the first time I’ve scrambled to get it together for vacation. It won’t be the last.

Martin, my love, my bunny rabbit, may you cherish these days. Happy Christmas.

The breakfast I made you yesterday. You complained about eating eggs.

The breakfast I made you this morning. By then you weren't hungry because you were getting sick.

The breakfast I made you this morning. By then you weren’t hungry because you were getting sick.

From Crappy to Happy

Remember the post about really crappy days?

Today is a really crappy day!

Stick with me, though. This isn’t going to be an unhappy post. I’ve been doing too much frustration posting lately, like when I used to do too much middle-of-the-night posting. It’s just not healthy. So today, in this post, I’m going to write myself back to happy.

First: the background. A couple weeks ago, Martin wasn’t himself. If you read this blog regularly, you know that. Here’s an excerpt of an email I sent Martin’s biomed doctor March 13:

Most nights he’s taking two hours or more to fall asleep, and waking two or three times between midnight and 5:00 a.m. He is tired all the time. He’s also “floppy” again. He is extremely hyperactive; charcoal tablets, salt/baking soda baths, and clay baths haven’t helped. His teachers have been telling me that he’s inattentive in class and not responding to his name. He had a pee accident at school this week. Sunday afternoon he had a meltdown so severe that my husband was unable to get him out of the car.

We’ve been on nystatin two weeks, and the yeast hasn’t responded, as far as I can tell. Martin remains itchy.

In general, I have an unhappy kid right now, and I feel horrible about it. Obviously, we need to make changes.

Things have got better since I sent that email. I took Martin off nystatin, switched him to full GAPS diet (more on that in a later post), and on the advice of his homeopath, increased some of his “support” drops (Inflamma-Tone and Liver-Tone, among others). He took a turn for the better, in terms of increased awareness, and some reduction in time to fall asleep, and less itchiness.

This past Tuesday afternoon, he got sick. The school nurse called me to retrieve him, and I ended up having to keep him home the rest of the week. If you’re wondering why I haven’t posted much this week, try being housebound with Martin. While sick, Martin had good language and connection, but he slept poorly and was crabby.

Second: this day. Adrian’s alarm woke us at 7:00. Adrian and I got home last night at 11:00 pm from the City. I had to feed the cats and strain Martin’s chicken broth, so it was 12:15 am when I got to bed and 12:40 when I got to sleep. Martin woke three times between then and 7:00 am. He was never up long. Still, each time I had to get up, tuck him back in, and then get myself back to sleep. Figuring 30 minutes for those diversions, I got just under six hours’ sleep, interrupted. This was after a week when I was exhausted from his night waking and unable to nap because he was home with me.

Martin was still sleeping at 7:00 am. I would have preferred to get at least 30-to-45 more minutes myself. Not possible: Adrian had scheduled an early gym visit, because his trainer had something else to do later today. So up we were. I had Adrian fed and out the door before Martin left his bed.

I tried to convince Martin to dress himself. He did, eventually, but required 15 minutes of crying and whining to reach that point, and even then didn’t make it to the socks. He declared breakfast—chicken broth, salmon sausage, and a bit of banana—to be “all things I like!” Still, he dawdled. We ended up rushing to get out the door for his 10:00 am special-ed reading program at the public library. Amidst the hurry, Martin had a meltdown because it was too warm to wear his heavy knit “dog” hat.

We drove to the library. Martin had another meltdown because I said, as I do whenever Curious George comes along, that Curious George had to wait in the car. I delivered Martin, still teary-eyed, to the reading program. Then I walked to FedEx to ship my kid’s stool samples to a lab (biomed parents know that ritual) and proceeded to a coffee shop, where I sat alone, missing the easy camaraderie of the parents from Martin’s old Saturday-morning playgroup in the City.

When I returned to retrieve Martin, he had a meltdown because I hadn’t brought Curious George into the library with me. I suggested that we go to the car, where Curious George was waiting. Martin screamed. In the library. My suggestion, it turns out, was wholly unacceptable because Martin wanted Curious George to “play with him” in the library.

By the time we got home, I could feel myself coming down with whatever’s had Martin sick this week. I told Adrian I needed to lie down for 20 minutes. I climbed in bed and shut my eyes. Within five minutes I opened them again. Martin was running around the house yelling, “Mommy! Mommmm-eeeeee!” I could hear Adrian in his home office, on a call. Not wanting his call disturbed, I said, “Martin, I’m in the bedroom.” Martin ran into the bedroom and jumped on me. I got up. I took ibuprofen for my head, which ached.

For lunch I prepared raw carrots and broccoli florets with avocado-and-fermented-garlic dip. I called Adrian from his home office to come eat with Martin. Because the meal, which I named “dippin’ plate,” was new, I wanted Martin to see that Adrian was eating the same. Martin, however, claimed he needed the potty. He disappeared for 10 minutes, during which Adrian finished his own dippin’ plate and returned to his home office. So much for eating what Daddy is eating.

After I finally got Martin back to the table, he left repeatedly, running to our bedroom, the farthest point in the house, and laughing. It may go without saying that we ended up in a rush to get to his afternoon social program at the JCC, and that I left the kitchen a disaster, and that I didn’t get a chance to feed myself much, and that I was feeling worse by the minute.

When Martin and I finally were at the door, ready to leave, Adrian showed up. He asked, “Why do you seem grouchy today?”

On the way to the JCC, Martin peed himself and lied about it.

Which brings us to this moment. I’m in the JCC library, blogging while Martin enjoys his social program.

Third: the happy. Let’s review this day—

Martin took 15 minutes of crying and whining to get dressed. This was partly my fault. I broke routine by asking him to dress himself as soon as he woke, before he even went to the bathroom or ran around. And yet he still got managed the task. As a bonus, when I asked him to pull his arms inside his shirt, he looked down and said, “Oh, it’s on backwards,” and then cooperated fully.

I’m tired from a long week with Martin at home, plus I’m starting to get his illness. Having unexpected sick days is a hassle. The other days, however, Martin gets to attend a fantastic kindergarten. Adrian and I could hardly be more satisfied with Martin’s special-needs school and his academic progress. I make this point because I’ve seen from autism parenting forums how many families need to consider homeschooling because they have no appropriate placement. We are lucky

Speaking of Martin’s (and now my…?) illness, Martin had a fever! It was the second time he’s had a fever since we moved last summer. Fever is good. Fever is healing. Fever indicates that Martin’s immune system is responding appropriately to illness. That’s progress.

Martin had repeated meltdowns today. There’s a pretty good explanation: He too is tired, and not feeling so hot. (Lest you think I’m dragging a sick kid around town, it was Martin who insisted that he felt better and could go to the library this morning.) Plus, the meltdowns didn’t last long. When he wanted the dog hat, we talked, and he agreed to get Curious George instead. When he screamed in the library, I asked, “Remember last week when you screamed at church and we had to leave?” He took the hint and calmed himself down in exchange for extra playtime at the library. I offered five minutes playtime. He bargained me up to seven minutes. That works.

Martin didn’t eat with Adrian, and then ran away from the table. Each time, I kept my cool. I went to the bedroom where he’d run, took his upper arm, and walked him back to the table without a word. After a couple tries and not getting the attention he wanted, Martin settled down. In the end, he ate the dippin’ plate. The GAPS diet isn’t easy, especially when it comes to packing for school. If Martin accepts a dippin’ plate once or twice more at home, I’ll give it a go for school lunch. Hurray for new stuff.

Martin peed on the way to the JCC. My fault. In our rush to leave home, I didn’t have him sit on the potty. I figured he had just gone during lunch, and I didn’t want to be later than we already were. In the car I could tell he needed to go. When I asked him, he said he could hold it till we got to the JCC. That never works. At least I had spare pants and underwear in his backpack, so the afternoon wasn’t ruined.

I’m getting sick. But the ibuprofen has kicked in.

One of my March Madness brackets is doing fantastic in Adrian’s office pool, with all 16 of its Sweet picks intact. My favorite team plays tonight.

My son is recovering.

And now I’ve written myself happy again.

Martin, sick but managing his iPad.

Martin, sick but managing his iPad.

Curious George lending Martin a hand to recover from illness.

Curious George lending Martin a hand to recover from illness.

 

Plan B

My poor blog. I’ve let her whither. Thank you to everyone who left comments or emailed (findingmykid@yahoo.com) to say you missed new posts. It is beyond gratifying, to know my words are being read.

By way of explanation, I few weeks ago I fell ill. Nothing life-threatening; I’m on the mend now, and going to be fine. Nevertheless, I required a blog vacation.

Vacation’s over.

Since I stopped working as a lawyer, back in January, Martin’s recovery has felt like less of a burden.

(I use that word—burden—conscientiously. Martin’s path is a burden, for our whole family. I don’t pretend otherwise, and I know that one day Martin may read these words and regret that his condition burdened us. For Martin I note that all parenthood, by its nature, is a burden. Adrian and I chose that path, we’re glad we did, we would not want any child other than Martin, and the effort that we expend is repaid a thousand-fold every today that Martin manages some feat he couldn’t do yesterday.)

(Cripes, that was sappy. Sorry, Martin.)

The first morning I became sick, I experienced the full burden again. I woke cramped and barely able to stand. I needed half an hour to believe I could do anything more than lie in bed and moan.

In the pre-autism-diagnosis days, I would have asked Adrian to take Martin to the diner for breakfast and leave me alone. In the ASD recovery world, Martin’s breakfast must be made fresh, at home, and his morning supplementation routine takes an hour to complete, and unless I’ve made advance arrangements, I’m the one who must complete those tasks.

So I did. I dragged myself to the kitchen and fried a duck egg in fat with broccoli. I counted pills, measured oils, stirred powders into tea. I alternated standing at the counter, sitting on a stool, crouching on the floor. Finally I scribbled a shopping list and sent Adrian and Martin to Fairway, to buy myself some peace.

That was Saturday. I muddled through until Tuesday, and then wound up in the hospital, whereupon Martin’s nanny Samara interrupted her own life to come take over my home. Together we made it work until I was steady on my feet again.

Here’s the point: I don’t have a Plan B. I am the one who knows Martin’s routine, to a speck. If I am incapacitated, Martin’s recovery stalls until alternative arrangements are made. That’s what feels most challenging these days—being on call every moment, not having emergency time-off. It makes me realize that I’ve really got to take care of myself, if I’m going to take care of Martin.

Okay. I got the kvetching out of my system. Lest my readers think I’ve returned to blogging only to complain, let me end with the following three points:

1. Lacking a Plan B is no more than what most single parents face, day-in and day-out, whether their children are neurotypical or not. Moreover, many families lack the resources to have a functioning Plan A in place. In so many ways, I am blessed.

2. I’ve returned to blogging! Taking a month off, and receiving so many comments and emails during that time, makes me realize just how therapeutic this writing process has become.

3. Last week Martin and I were having breakfast. Adrian had finished his breakfast and gone to prepare for work. Unprompted, Martin addressed me and remarked, “I hear Daddy blowing his nose upstairs.” Martin expressed neither a need nor a want; he formulated (perfectly) that sentence solely for the purpose of sharing an observation with me. At that moment I needed no break, no Plan B, no time off. Plan A is working. That will do.

Happy to be back.