A nebulizer mask filled with puke

JF has apparently caught some kind of stomach bug. He didn't eat much at dinner. Then, in the middle of a Pulmicort nebulizer treatment, he suddenly emptied the contents of his stomach. Into his nebulizer mask. Not a pretty sight.

I wish he would/could tell us, "I feel yucky." Then we would have some advance notice.

Whenever he pukes or has a fever, I say to him, "I feel yucky." With his echolalia, he's compelled to say it back to me. I'm hoping that he'll eventually figure out when he should say it on his own.

We've cleaned him up and put him in bed, with a big bowl next to his mattress. I don't know whether he'll use it, but it can't hurt to have it handy.

Before JF had even finished barfing, AF asked me to stay home with the boy tomorrow.

AF is very busy at work these days. They are converting apartments to condos, and they have four walk-throughs tomorrow. That is, four potential residents want to walk through freshly-painted condos, so AF and his co-workers have to bust their butts to finish getting those condos ready.

Things are a little slower at work for me, so I'll stay home with the boy tomorrow. Then, if JF is still too sick for daycare the next day, we'll split the workday: AF will work four hours in the morning and I'll work four hours in the afternoon. Then in the evening, one of us will probably work another four hours. This is what we do when JF is sick.

A quick update

JF's PEP teacher has postponed her home visit until this Friday, because she isn't feeling well. (So I have more time to obsess over the questions I want to ask her.)

Over the weekend, JF has suddenly become more reliable about going to the potty without any prompting. Perhaps he has gradually become more reliable over the past week, but it's hard for us to see it because he is at daycare all day.

Plus, this morning, both times that he peed on the potty, he asked for a sticker, but not an M&M. A week ago, he cried as if the world was ending (apparently) because he couldn't get an M&M. And now he isn't even asking for them? If it had been just once, I would have thought it was strange that he forgot. But twice in a row?

Last night, after JF had peed on the potty, he had asked, "More M?" There were only two left in the zippered baggie in that bathroom, and AF made a point to tell him so. Then AF and I discussed whether we should stop giving him Ms for peeing, when the baggies in each bathroom are used up. We discussed this in front of him, and I know we shouldn't discuss JF in front of him, but if we tried to avoid that, we'd never be able to discuss JF at all. So now I'm wondering, did he understand what we were saying and take it upon himself to stop the M&M rewards?

Time will tell, I guess.

Snapshot of JF, continued

After I published Friday's post, I kept remembering more things about JF that I should have included in the snapshot:

• He can run, jump, and climb. On the playground, there are some ladders that he can climb up, but not down.
• He recites numbers up to thirteen. Sometimes he counts accurately (one number per item) up to about nine, but sometimes he skips or double-counts items. When counting my fingers, he's accurate until I show him six fingers: He starts over at "one" because he's only looking at the second hand.
• He recites the alphabet (as part of the ABC song) clearly, except for the letters LMN. His PEP teacher recently said that he recognizes capital letters well, but we need to work on teaching him to recognize lower-case letters.
• He uses the wrong pronouns, echoing exactly what is said to him instead of changing "you" to "I" and vice versa.
• He likes to pick up a handful of things and watch them fall from his fingers. This includes sand, gravel, mulch, cereal, and raisins. Sometimes he dumps these things on his own head.
• He loves music in any form: He listens to CDs, radio, or musical toys. He "plays" instruments like the triangle or xylophone. He loves to sing to himself.
• When he is upset about something, he might calm himself down by singing a song or by asking for a tissue to wipe off the tears. Then he asks, "Is that better?" He wants someone to ask him that, so he can say, "That's better."

Also, on Saturday morning, for some reason I decided to take note of each thing he said (that I could understand) from 6:00 AM until 9:00 AM. Almost everything was a script:

• "It's hot! Very, very hot!" It was lukewarm oatmeal.
• "Ready for daycare?" A moment later, he answered himself with a sad voice, "No, no daycare today."
• "Topple to ya!" Top of the morning to you!
• "Hmm, let's see." From Horton Hatches the Egg by Dr. Seuss.
• "It's a honey-sweet day, whenever we play, I hope forever friends we'll stay." A song from Winnie the Pooh LeapFrog book. Also, "One bounce, that's it Pooh, two bounce, woo hoo hoo, three bounce, you did that very well."
• "A mouse ee tock, a mouse ee two, hick hick tock!" He's still figuring out this song.
• "Open it."
• "Turn it off."
• "No, we do that!" Telling himself that we don't do that. He often says this while doing the very thing he's not supposed to do, as if to say, "Mommy, I have no self-control, please come take this away from me."
• JF was opening the battery compartment of the remote control, so I took it away from him. He pointed away and said, "Go!" Then, "Go away class!" (One of his PEP teachers recently mentioned teaching JF how to say, "Go away" in an effort to reduce his aggression in daycare. It may be that he is hitting/hair-pulling/whatever because kids are bothering him and he doesn't know how to tell them to leave him alone. So I didn't take offense when he told me to go away. I can only guess why he added "class" in there.)
• While playing with wooden blocks, he said, "What color?" The one he was looking at didn't have any paint, so he said, "Stripes."
• "Night-night." He was saying good night at 8:30 AM.
• "Listen."
• While pretending to talk on the phone, or while opening & closing things, "What? Buggaber? Okay. Okay yes. Bye bye." We have no idea what Buggaber means. If he's pretending to talk on the phone, he'll end this "conversation" with hand motions like pressing buttons on a phone.
• "More water?" Then he answered himself, "Right here! On the table!"
• "What's Daddy doing?"
• "Piggy-back!"
• "Bye, see you later."

Okay, now I'm going to make myself stop obsessing over this snapshot of JF's abilities and quirks.

Sacrificing sleep for blog therapy

On Monday evening, JF's PEP teacher will visit us at home. We've had a few home visits already, so I know what to expect. But this time, I've done my homework. I finished reading Autism Spectrum Disorders by Chantal Sicile-Kira a few days ago.

Here's my review, having read no other autism books for context: It seems like a very thorough reference and introduction to the subject, but it seems to just skim the surface. It whetted my appetite for more information on ASDs. Maybe this is exactly the kind of book I needed to read at this point, because I want to go out and buy half of the other books this book listed. Maybe there is no way to put all of the information into one book.

I get the impression from blogs and from this ASD book that I shouldn't be complacent. I really like JF's PEP teacher and I believe she has been doing a great job with him. He has made a lot of progress since he started PEP in September. But...? The NCLB Act was not fully funded; Therefore, by definition, the school system can't be doing all that it should be doing for my son. Right? Also, an Advice for Parents article says, "There is general agreement that...the interventions should involve a substantial amount of time each week, between 20-40 hours...." JF gets only 15 hours a week.

So perhaps I should investigate how JF can get more therapy. The problem is that we both work outside the home now. My husband was a stay-at-home dad until November 2005, when JF was 2.5 years old. We enrolled JF in daycare at that point because we were starting to worry about his development and we were hoping that he just needed to socialize with other kids his age. PEP seemed like a godsend, because they pick him up from daycare at noon and drop him off at daycare four hours later. If we were to sign up JF for more therapies, one of us would have to quit working to chauffeur him from therapy to therapy, and to manage those therapies. I would want to convince myself that this was necessary before we considered it. But there is no yardstick, as far as I can tell, that can tell me whether this is necessary, for JF.

There were some therapies/treatments described in the ASD book that would not require one of us to quit working: All of the dietary treatments and the Irlen lenses. I think we'll investigate those first. I'll read more books on the subject. Then maybe I should make an appointment with a developmental pediatrician, someone who has experience with ASDs, and ask that doctor for guidance. JF has an appointment with his neurologist at the beginning of March to discuss his recent EEG. Maybe that doctor could also provide some guidance.

Meanwhile, we're switching him to a different multi-vitamin. He's been on PolyViSol since he was a baby, currently taking 1 ML per day. A few months ago, I tried to switch him to Flintstone's chewables, but he apparently didn't like it. (Maybe it was a texture/sensory thing.) Now we have L'il Critter Gummy Vites. When we bought them, I vowed, if JF doesn't like these, I'll eat them, because I hate to let things go to waste. Fortunately, JF likes them. The percent daily values are over 100% for some things for the 2-4 year group, but below 100% for the 4 & up group. I don't like to go over 100% with vitamins, especially the fat-soluble ones. So, until his fourth birthday in May, we'll alternate between the PolyViSol and the Gummy Vites. The ASD book has a paragraph about the benefits of vitamin B6 and magnesium. The Gummy Vites have twice the B6 as the PolyVisol. Neither one apparently has magnesium. Maybe we need to look for gummy vitamins that have both. (And then I'll have to eat these Gummy Vites.)

I also want to ask the PEP teacher what kind of therapies they are using in the PEP class. I think she mentioned ABA. When I told her how I was teaching him to dress himself (very patiently, little by little, showing him hand-over-hand what to do, and praising each little success), I think she said something about ABA. I know she uses PECS. She gave me a sheet of picture symbols to help with the potty-training. (It did help!) And she has been saying since the last home visit that she will give me more picture symbols for his daily activities. (Maybe she'll bring them on Monday.)

But this ASD book describes many more therapies than just ABA and PECS. I need to dig up JF's IEP and read it again with my new knowledge. Maybe it will make more sense to me this time. Then, on Monday, I'll ask the PEP teacher about the other therapies listed in this ASD book.

So now I have a skeleton of a plan. I feel a little better.

But I still wish I could figure out how much help JF needs. We believe he has an ASD, but we don't know which one (classic autism or PDD-NOS). Here is a snapshot of what JF can do now (based on the ATEC form in the back of the ASD book):

Speech/Language/Communication:

• He answers correctly, "What's your name?" He might answer correctly, "How old are you?" with the word three or he might get distracted by the effort to hold up only three fingers.
• Follows many commands, such as, "Bring me your shoes" or "Put your crayons away."
• Recites many books, such as Dr. Seuss, and songs, including Happy Birthday To You, You Can Do a Lot Under Water (Milkshake), Twinkle Twinkle Little Star, Let It Snow, the ABC song, and so on.
• Other than songs and books, uses many scripted phrases, such as, "Where's Daddy?" and "More sit on the potty?"
• Has been improving daily on explaining what he wants. He says, "I want..." and fills in the blank. He recently learned the usefulness of the word "this" in this context. If a toy that he wants is out of his reach and he doesn't know a name for it, he will point to it and say, "Please help more dis?"
• Otherwise, he does not ask questions. His speech is always meaningful and relevant, but only from his perspective. He does not participate in conversations.
• Often repeats exactly what you've just said to him, verbatim, with the same inflection. (Echolalia)

Sociability:

• Sometimes will ignore people. When I say his name, sometimes he will turn and look at me, but sometimes he won't.
• He cooperates very well, most of the time. Otherwise, he dawdles and gets distracted from the task at hand.
• He has eye contact issues, according to the county school evaluations, but at home, with his parents, he makes eye contact often.
• He shows affection in the form of hugs (even to strangers), and kisses.
• When I come home from work, he usually does not come to greet me. Once, however, he greeted me and showed me something ("Momma, see dis?"), which was a double shocker.
• Imitates! Actions, words, everything! When we tried to teach him how to spit out toothpaste, he started a bad habit of spitting, everywhere and all day.
• Likes being held/cuddled. He used to always back into a hug, and sometimes he still does.
• Rarely shares or shows anything (one exception described above).
• Has waved bye-bye since he was a baby, backwards.
• He hasn't had a temper tantrum in a long time.
• Has friends/companions at daycare and PEP, maybe?
• Smiles a lot.
• Insensitive to other's feelings. Currently not hitting his classmates and parents as much.
• Indifferent to being liked, maybe?
• Upset if parents leave. We have to reassure him, "Mommy/Daddy will be right back."

Sensory/Cognitive:

• Responds to praise.
• Looks at people, animals, pictures, TV. (Currently fascinated with the remote control.)
• Draws lines, squiggles, the first three letters of his name, and a smiley face.
• Plays with some toys appropriately, but not all. He often breaks pencil points. He demands that Daddy wind up a car for him, even though he has done it himself before. When he's playing with toy cars, he likes to spin the wheels. He'll try to spin anything roundish.
• Usually has an appropriate facial expression, unless he is hitting you. In that case, he's smiling as if he has just given you a hug.
• Does not understand stories on TV or explanations?
• Aware of his environment? Aware that his daycare is near his home. When he's upset, he'll look out the window toward home.
• Unaware of danger.
• Starting to show a little imagination?
• Initiates activities. He finds a toy and starts playing with it. He finds a book, hands it to you and says, "Read to you? Ank you?" (Translation: "Please read this to me. Thank you.")
• When handed articles of clothing in a certain way, can dress himself with little help.
• Curious & venturesome most of the time.
• Looks where others are pointing, but not where others are looking?

Health/Physical/Behavior:

• Recently almost potty-trained during the day. Still wears a diaper while sleeping. Might have one accident each day.
• Diarrhea when he's sick, which is about once a month. Otherwise, perhaps constipation?
• Sleeps through the night, unless he's sick.
• Some days he eats a lot, some days he eats little.
• He loves almost any carb (bread, bagel, oatmeal, crackers, cake, cookies, noodles). He loves PB&J sandwiches, grilled cheese sandwiches. He loves milk, cheese, & yogurt. He is picky about meat, veggies, and sometimes fruit. He refuses any form of potatoes except chips. He refuses any form of eggs.
• Sometimes hyperactive and sometimes lethargic.
• When frustrated, might bite himself. Sometimes pinches a freckle on his leg.
• Sometimes aggressive to others: Hits, pinches, slaps, kicks, and pulls hair. (We're working on this.) Sometimes he seems to do it as if it were a sign of affection. Sometimes he does it out of frustration.
• Destroys pencil tips. Draws on the walls. Steps on his toys. Otherwise not destructive.
• Maybe sound-sensitive. (Used to cry when visiting relative's house, which was noisy.)
• Sometimes anxious/fearful/unhappy/crying.
• May have had one seizure. Also has staring spells, which may be mini-seizures. (Waiting for results of EEG.)
• Obsessive speech! Much perseverating! "Where's Daddy?" "At work." "Where's Daddy?"
• Routines can be changed, and he doesn't seem to mind. On the weekends, he asks, "Ready for daycare?" until distracted by some other activity.
• Sometimes shouts/screams.
• Does not demand sameness.
• Sometimes agitated.
• Sometimes seems not sensitive to pain.
• Fixates on certain topics, singing the same song for days, or reciting the same book for days.
• His repetitive movements may have disappeared: He used to open/close doors a lot, but not as much now. He used to look at things with his peripheral vision while moving his head, but not as much now.

Wow, this turned out to be quite long. If you have actually read this post all the way through, you must be either married to me or very bored. Or both.

No UTI, and other news

The doctor left a message for us: The lab results on the pee sample were negative. JF does not have a urinary tract infection. Yay!

We still don't know for certain why he cried, as if in pain, multiple times Saturday morning. We'll have to assume that it was simply despair at not being able to earn an M&M because his bladder was empty. I'm a chocolate lover myself (currently trying to cut back on my chocolate intake because of mytral valve prolapse), so I sympathize with his plight. But if his chocolate cravings were the only reason we high-tailed it to Columbia Saturday morning, we need to find some other reward for using the potty!

I also sympathize with DDM's comment on my previous post, where she said that Bugga can't tell her whether he feels the need to go or not. There are so many things I wish JF could tell me. I don't know whether JF feels the need to go, either. The times that he has said to us, "More pee on the potty?" may have been just a simple craving for an M&M. With all of today's modern medical technology, you would think that there would be easier ways to figure out what's going on inside our bodies, or inside our children's bodies. It would save us a lot of useless worry.

That reminds me: JF had a sleep-deprived EEG today, because his PEP teacher reported to us (months ago) that he has staring spells, which could be mini-seizures. JF attends PEP class three hours per day, five days a week. His PEP teacher says he has about four staring spells in each three-hour period. When she told us about it, we realized that we've seen these staring spells before, but we'd never thought anything of them. We're so used to JF and his quirks, like having to do jumping jacks sometimes to get his attention. We had always thought that he just liked to daydream. And he doesn't do it at home as much as he does it at PEP. It seems that when more is being asked of him, he tends to space out more.

He had a sleep-deprived EEG last May, because we thought he might have had a seizure. A month before, he'd had a fever and suddenly became unconscious on the couch. AF rushed him to the ER, where the doctor there determined that he had a sinus infection, but that didn't explain the loss of consciousness. So that's where the referral for the first EEG came from.

When we showed up for the first EEG, I had forgotten my wallet and JF's blue puppy-blanket. Fortunately, my neighbor had come with me and paid the copay for me. (Thanks, Liz!) However, there's no replacing Puppy. After the nice lady-technician had placed all of the electrodes on his head, it was my job to get JF to fall asleep. He was tired, but he kept asking, in the most pitiful voice, "Puppy?" I gave him a washcloth to hold in its place, and sang to him to make up the difference. Then the technician let him sleep for about a half-hour, while she watched the zig-zag lines on the monitor. I was bored during that half-hour.

Then the tech had me wake up the boy, and she flashed bright lights in his face. He hated it. I had to hold his hands to keep him from covering his eyes. (It's amazing how we parents cooperate with tormentors.)

A week later, the results of that EEG were negative. No sign of epilepsy. So we don't know what happened on the couch that day. Maybe he passed out from the pain? Maybe it was a febrile seizure? We may never know.

At today's EEG, I remembered my wallet, JF's Puppy, and a book to read. This time, however, by the time the technician had placed all of the electrodes, JF was already asleep. I gave him Puppy anyway, just in case. The lady tech (the same one) asked me about the scar on his head. We told her everything we know about it: He was born with a laceration on his crown and the doctors "didn't know" what had caused it. She speculated that it might have something to do with his developmental delay, if the laceration had been deep enough. Interesting.

Otherwise, the test went the same as before. JF still hated the bright, flashing lights, and I still had to hold his hands, but he calmed down quickly when it was over. When we left, he said to the tech, "Bye bye. See you later." She was nice, but if we see her later, I hope it's not in the same place. I hope this is the last EEG we have to endure.

Urinary Tract Infection?

JF is now taking a nap, so maybe I can complain about yesterday morning.

This story started at Christmastime. For one reason or another, we were unable to visit with my entire family at Christmastime, so Sister1 and Brother2 both sent me e-mail messages the next week saying that they had gifts for JF.

A week ago, I finally managed to schedule a day when both Sister1 and Brother2 could come visit, so they could give JF his Christmas gifts. Then I opened up the invitation to the rest of my family, if they could make it. I look forward to these family gatherings, and even enjoy hosting them, in spite of my social anxiety (and my issues with Brother1).

The scheduled day was yesterday, and I told everyone to arrive noonish.

As you may know from previous posts, JF had a fever from Monday evening until Thursday morning. We were relieved that he got better before the planned weekend get-together. (Insert ominous music here.)

When I woke up yesterday (at 5:00 AM!), I made a to-do list to prepare for the family gathering. The plan was that I would watch JF, do laundry, and declutter the house while AF buys groceries, take-out food for the big lunch, and a housewarming gift card for Brother2, who had just bought a new house. That was the plan.

Now this may seem like a change of subject, a subject that is dear to my heart right now, but bear with me: The moment JF woke up yesterday morning, he said, "More sit on the potty?" Of course, I ushered him to the potty and provided assistance where required. His night-time diaper was wet, as usual. (Yes, he was wearing a diaper, but that was because he just woke up. We're not worrying yet about night-time dryness.) He sat on the potty, pointed down, and ... cried. It was a loud, high-pitched cry, as if he were in pain.

My first theory was that his bladder had already been emptied into the diaper, and he was crying because he couldn't pee and therefore wouldn't get an M&M. I told him, "That's okay. Maybe next time. Let's brush your teeth." Distraction is the invention of motherhood.

After breakfast, AF took JF to the potty again. Again he cried, as if in pain, and didn't pee. We started to worry. A little later, JF started crying out of the blue in the living room. By 9:00 AM, we decided to call the doctor.

To complicate matters, JF's pediatrician is Dr. Strahlman in Columbia, MD, which is about an hour drive away. (We had originally had a pediatrician closer to home, in Rockville. But they had dragged their feet about JF's monthly fevers, so AF asked his siblings for a recommendation. The result was Dr. Strahlman in Columbia. We like him better, so we put up with the hour-long drive.)

AF called the doctor and made an appointment for 10:30 AM. (Another reason we like this pediatrician is their Saturday hours.) I volunteered to take JF to the doctor and AF volunteered to do everything else. (One of many reasons why I love him.)

Just before we left the house, we tried putting the boy on the potty one more time. He peed without any problem. Huh? No crying in pain this time? No. Just the usual squirt into the potty and "More M?"

We didn't know what to think. We decided to go ahead and take him to the doctor, because the doctor's office is closed on Sunday. We'd rather waste a Saturday morning and a $15 copay today, than have to waste part of Sunday and a $75 copay at the ER.

We packed changes of clothes, small toys, and his medication log into JF's diaper bag. We packed sandwiches & other stuff for both of us into a lunchbox. I grabbed the diaper bag, the lunchbox, and my purse (with my cell phone in it), proud of myself for remembering everything. JF and I were off.

JF fell asleep 20 minutes into the trip. That is unusual for him. He usually doesn't nap until after noon, but I figured that he's still tired from the recent fever.

When we arrived at the doctor's office, I grabbed my wallet from my purse, some cheese-cracker fishies and water from the lunch box, and dumped them into the diaper bag. I didn't want to have to haul everything into the doctor's office, and I figured that's all I'd need. (More ominous music.)

JF hugged the lady in line behind us. He's been doing that a lot lately. I said, "I hope you don't mind." She didn't. I need to ask his PEP teacher about this.

The doctor (not Stahlman, but another doctor in the practice) listened to JF's lungs & heart and looked in his ears & throat, and said that as far as he can tell, JF just has a cold. He asked for a pee sample. At first the nurse gave me a pee cup and started to give me instructions. I told her that he's only recently potty-trained (which is an over-simplification, because I don't think he's fully trained, yet) . I told her I wasn't sure I would be able to get him to pee into a cup. So she put a bag on him. I think these things are the greatest invention for capturing a child's pee.

So then, we just waited. And waited. And waited. I tried putting him on the potty, and telling him to point down. I tried letting him play with warm water at the sink. I tried offering him his sippy cup of water often. The only thing I didn't try was to put a diaper on him. Maybe that would have worked, but I was so intent on following the potty-training rules that I didn't consider it.

Throughout, JF was happy, cute, and playful. He didn't repeat that mysterious pain-cry for the doctor's benefit. (Of course.)

We waited from 10:30, his appointment time, until noon. All this time, I was worried about what was going on at home. I had left my cell phone in my purse in the car, so I asked to use the office phone. I called AF and told him that we're waiting for JF to pee.

Then the doctor told us to go home. I wanted to cry.

I know this experience is nothing compared to what other mothers have to deal with. It's good that the doctor didn't find anything. It's good that JF was happy during that doctor visit. Maybe I'm being oversensitive and selfish. But it just seemed so pointless, that we spent all of this time away from home, for nothing. I kept reminding myself that everything happens for a good reason, even if I don't know what it is.

The nurse gave me the pee cup, an alcohol wipe, a baggie, and instructions to have JF pee into the cup first thing Monday morning and save the cup in the fridge until someone can bring it back to the doctor's office.

We left the doctor's office at about 1:30 PM and came home at about 2:30 PM. And JF still had dry pants!

My living room was crowded: Dad, Brother1 & his son, Sister1, Sister 2 and her daughter, Brother2, and AF. (By the way, how do you distinguish between the family you grew up with [parents & siblings] and the family you are raising yourself [spouse & children]? In both cases, I want to say "my family" but it doesn't convey which one I mean.)

JF hugged everybody. He gave Brother1 a running leap hug, which annoyed the heck out of me. (Can't he see this uncle is a jerk?)

Then AF took him to the bathroom. When they came back to the living room, AF announced that JF had peed on the potty, and everyone cheered and clapped.

JF's late Christmas loot:

• Dad gave him a Sesame Street magnetic drawing board.
• Brother1 gave him a Curious George book/CD set.
• Sister1 gave him a "plasma car" which is apparently like a go-cart, except you make it go by wiggling the steering wheel.
• Sister2 gave him several musical toys and a pack of little books (like Stone Soup).
• Brother2 gave him a new Dr. Seuss book (Sneetches) and a matching stuffed animal. (I need to figure out how to tell Brother2 that stuffed animals are not good for allergies and JF doesn't play with them anyway.)

I figure this is a good point to end this story, but it really hasn't ended until we collect the pee sample tomorrow morning, bring it in, and get the results back. Maybe it was nothing (I hope it was nothing), but I'm still annoyed about the whole wasted morning.

Potty Training & Other Things on My Mind

About Blogging

I switched to a different blog template so that I could move a few things to a sidebar. I think this template looks better overall, too.

About Potty Training

JF amazes me every day:

• Yesterday morning, I heard him say, "More sit on the potty?" AF didn't understand him at first. Instead of waiting for Daddy to understand and take him to the bathroom, JF ran to the bathroom on his own! Yay! (Afterwards, AF said he had heard, "More silly putty?" Is this an indication of JF's pronunciation?)
• Today, Just as AF arrived at the daycare, JF had pooped in the potty!

I think JF's sudden series of successes on the potty are due to the following:

• Months of preparation (having him sit on the potty every morning, teaching him how to pull his pants up and down, teaching him about pee and poop, and so on)
• Support from his teachers at daycare and PEP
• Two and a half days of Potty Island (described in a previous post)
• After Potty Island, schedule training (we tell him it's time to sit on the potty when he wakes up, before bed, before we leave anywhere, after we arrive anywhere, and after each meal)
• After Potty Island, reserving diapers for when he sleeps and using underwear otherwise
• Neutral reaction to accidents ("Okay, let's clean it up. Maybe next time you'll get to the potty in time.")
• Rewards for successes in the form of hugs, kisses, praise, stickers, and especially M&Ms

I don't intend to claim that he is completely potty-trained at this point. I won't say that until I can rely on him to take himself to the bathroom as needed, during the day. Most of his successes right now are still when we tell him it's time to sit on the potty. But a few times over the past few days, he has told us that he needs to go, which means he is starting to recognize when he needs to pee. Yay!

About My Dream House

AF's brother wants to sell us his Jessup house. We're still figuring out whether we can afford to do so, but the idea has prompted me to think about my dream house, and how we might make the Jessup house more like my dream house.

I guess my requirements come from living in a trailer as a child, then an old house on Cobb Island, then a series of apartments as an adult, and now our current old house in Gaithersburg. I was frustrated with the design of each place and wanted to solve the puzzle of designing a better house. I remember a conversation with Mom in the Cobb Island house, where she said she was frustrated with the kitchen. We had to close the oven door before we could open a cabinet door. We had to climb on the counter to reach stuff in the top shelf. We had to pull everything out of one cabinet to reach stuff in the corner cabinet.

I decided that an ideal kitchen should:

• Be big enough so that opening one appliance or cabinet won't block another.
• Have doorways placed so that all corner cabinets are accessible.
• Be adjacent to a pantry so that we don't need to store things where we can't reach them.
• Be open to the rest of the house so that people working in the kitchen don't feel left out.
• Support the flow of work: Supplies in one area (fridge, dishes, pots & pans), cooking in the next area (stove, microwave, & counter top for food preparation), and clean up in the last area (dishwasher, sink, drying rack, & an under-counter trash can).

Another problem arose when I started living on my own and had to haul groceries from my car to the kitchen. I thought that houses ought to be designed so that the distance between the car and where the groceries go is as short as possible. The breakthrough in solving this puzzle came from a magazine. Maybe it was This Old House. It had an article that described a mudroom-pantry. What a great idea!

I decided that an ideal mudroom-pantry should:

• Be the hub of the house, with doorways to the garage, kitchen, office, a powder-room, and the rest of the house.
• Have cabinets on one side for use as a pantry. (Drop off half of the groceries here.)
• Have cabinets on the other side for purses, keys, coats, hats, gloves, scarves, boots, and so on. Each person in the household should have his or her own cabinet. Each cabinet should also have a mirror and other supplies for last-minute grooming.
• Have a bench for sitting on when taking off or changing shoes.
• Have a counter top for temporary placement of mail, newspapers, and other paperwork.

When I was renting apartments, I hated having to haul laundry to another building! Now that I own a house, I still grumble about having to haul laundry up and down two floors. It's better than having to go to a laundromat or to the landlady's basement, but it still sucks. I decided that an ideal laundry room should be on the same floor as the majority of bedrooms in a house.

Also, our current house has radiators. I've decided that I like radiators more than any other heating system that I've lived with, which has included forced-air heating and a kerosene stove. Radiators give off subtle heat, and are better for allergy sufferers than forced-air heating. The problem with radiators is that they limit furniture placement options. When AF and I were watching This Old House on TV one day, I was amazed to learn about radiant floor heating. You have the same subtle heat as radiators, except it comes from the floors!

Alas, we probably won't be able to implement all of these ideals in the Jessup house. AF broke it to me gently that I can't move the laundry appliances upstairs. But maybe we can implement pieces of the ideal kitchen, most of the mudroom-pantry idea, and radiant floor heating. That's a heck of a lot better than our current house!

Is it really autism?

As you may know from my previous post, I've been reading Autism Spectrum Disorders by Chantal Sicile-Kira. JF has been attending PEP since the end of September, almost four months ago, and only now have I bought a book about autism and started reading it.

I could claim that I haven't had time to go to the book store, that too many other things have been going on. But I apparently didn't place a high priority on learning about autism.

Yes, I was in denial. I didn't want to believe that my son has autism.

When the county evaluated JF at age 37 months last summer, I could accept the numbers:

• Visual Motor Imitation ------- 42 months
• Cognitive Verbal/Preverbal -- 35 months
• Gross Motor ----------------- 31 months
• Fine Motor ------------------ 26 months
• Receptive Language --------- 20 months
• Expressive Language -------- Less than 12 months

These numbers fit with what we had observed, what we had been worrying about for months. JF could sing songs recognizably, and recite several entire Dr. Seuss books, but was not otherwise talking much. He had lots of memorized phrases, like "Where's Daddy?" Technically these were sentences, but there seemed to be something missing. When he wanted something, he would say, "More?" We would ask, "More what?" He would start to get upset and plead, "More?"

When I met other kids his age, they would approach me and say creative things like, "Barbie is getting ready for a party." Or "Look what I built with blocks!" Or "I'm gonna be Spiderman for Halloween." JF would never have said anything like that.

But I still didn't want to believe that he might have autism. In my mind, autism meant completely blocking out the world, unreachable. JF smiles, laughs, and gives hugs. It can't be autism.

It's not that I was worried about the label. I grew up with teasing for being short, and I beleive that it made me a better person. Not that being short is the same as being autistic, but none of us are perfect. I never expected my son to be perfect. The label would give JF the public services that he needs.

At the next family gathering, I told my dad and siblings that JF has a developmental delay, will start attending PEP, and might have autism. Brother1 crankily refused to accept that JF has developmental delay and started badmouthing the people who evaluated him. I asked him, "Why are YOU angry?!!" (Keep in mind that I have other issues with Brother1.) What right does HE have to be angry about JF's evaluation? That's MY prerogative.

After that, when I spoke to people about JF's language and other delays, I used the term developmental delay, avoiding the term autism.

The problem is that we don't have a definite diagnosis. If a doctor or other professional told me, "Your son definitely has autism" I would be able to accept it and move on. I guess I need to ask his PEP teacher and/or his pediatrician whether/when/how we could get a definite diagnosis.

Is it okay to switch subjects in a blog post?

Last Friday, per the pediatrician's instructions, we dropped down from two doses of Pulmicort per day to one dose per day.

Then we had a busy weekend. On Saturday, JF went to a birthday party for a three-year-old girl, then visited two other households (aunts and uncles and cousins, oh my!). On Monday the 15th, JF's daycare was closed for Martin Luther King Jr.'s birthday. It was my turn to take time off work to stay home with him. So I took JF to a Milkshake concert (www.milkshakemusic.com).

By Monday evening, JF had a fever, 101.3. Is it because we dropped a dose of Pulmicort, or we visited too many places, or both? Or neither?

Since he was 10 months old, he has had a fever or some other illness at least once a month. At one point, he hit 105.9 degrees Fahrenheit. This scared us more than anything ever has. We have since then discovered that he has allergies to trees, molds, dust, and cat, and that he has asthma. So now we have ways to deal with his frequent illnesses. But he is apparently still getting sick once a month, and we worry that he will spike a fever faster than we can deal with it.

So AF stayed home with him all day yesterday. Last night, I brought my laptop home from work so that I could try to work at home while taking care of JF all day today. I don't know why I thought it would be a good idea. It's hard enough to balance work and home, without trying to do it at the SAME TIME!

Every time I started to make progress on my work, JF needed me. Actually, I'm quite proud of myself for paying attention to JF as well as I did. He peed on the potty five times today and had only two accidents. I offered him many things to eat, and he ate a few bites of bagel, crackers, applesauce, raisins, and lots of water. Now I'm exhausted.

When AF came home, I called it a day and started exploring blogs. I always start with DDM's blog, because that's the one that introduced me to blogging. (I found her blog because I Googled "developmental delay" and "chiari" wondering whether my ACM1 might explain JF's delay.) Then I read blogs written by the people who comment on her blog. (I get the impression that it's impolite to read a blog without commenting, but sometimes I just don't know what to say.) My point is that some of the blogs I read tonight helped to put things into perspective, such as The Journey.

Reading these blogs is better than any support group. It reassures me that I'm not alone.

An update on JF

JF was very good yesterday. We attended a birthday party for a three-year-old. He peed on the potty twice at the birthday-girl's house! Afterwards, since we were in the neighborhood, we visited two of my husband's siblings and their families. At the first one, JF peed on the potty twice again! He stayed in a good mood all day and didn't hit anyone.

Today, he wasn't as good. It started off well, with two successes on the potty. In fact, the second success happened after JF said, "More potty please?" I think that's the first time he has ever initiated a potty-sitting. Maybe it means he's starting to recognize the urge to pee. But then I started getting him dressed (intending to take him the indoor play area at the mall), and he hit me. I tried the "get ready" chair, as his PEP teacher had suggested. He hit me again. "Okay, no mall!" He didn't seem to care.

I'm beginning to see that JF's habit of hitting and pinching me is a response to my own tension. I get all worked up, impatient with him. It was hard to see this at first, because he always does it with a smile, as if he's doing it just for fun, or as a backwards sign of affection.

When I'm helping him get dressed, I always try to strike a balance between doing too much for him and expecting too much of him. If I hand him each article of clothing in a certain way, he can usually put it on by himself. He still needs a little help with socks and Velcro shoes. He sometimes needs to be reminded to sit down before attempting to put on underwear or pants. He can take off most articles of clothing by himself, but he still needs help removing shirt sleeves and socks. He has come a long way over the past few months, little by little.

After he puts on each article, I clap and say something like, "Yay! You put it on by yourself! Good job!" I make a big deal about it to reward him for his success, and he seems to appreciate it.

The problem is that he will take the article of clothing from me, and act like he's going to put it on, and then he gets distracted by a dust mote on the floor, which suddenly became very fascinating. He's testing me, and I know it. ("What happens if don't do what Momma wants?") My response has been to try to bring his attention back to the task at hand. I might point to the forgotten article of clothing (if it's still in his hands) or hand it to him again. Or I might take away the thing that is distracting him (if I can). Or I might say his name, louder and louder until he responds. Very rarely, I might get fed up and put the darn thing on him myself.

By the time he's almost fully dressed, out of nowhere, wham! He smacks my cheek with the flat of his hand. And it hurts. He's apparently had enough of my tension. How can I get him dressed without triggering this response?

I read somewhere, "If you act like you have only fifteen minutes, he'll take all day. If you act like you have all day, he'll take fifteen minutes." Maybe I should just hand him each article, stand back, and keep my mouth shut until he's put it on. I'm afraid he might sit there, buck naked, playing to his heart's content until the cows come home. I'll try this, but it will be hard to do. I will also ask his PEP teacher what she thinks of the tension-trigger theory.

In other news: Last night I bought three books using gift cards from Christmas and my birthday:

• Autism Spectrum Disorders by Chantal Sicile-Kira.
• Thinking in Pictures by Temple Grandin
• Toilet Training by Vicky Lansky (This is actually two books in one, with Koko Bear's New Potty by the same author.)

Did I buy any books for me? No, because I couldn't find my book inventory. I can't stand buying a book and then finding out that I already have it.

I intend to post whether any of these are helpful to me, when I've finished reading them. I've already read the first three chapters of Autism Spectrum Disorders. From my other research, I had been thinking that JF might have Asperger's (or PDD-NOS). This book has slightly different definitions of the five diagnoses in the spectrum, so now I'm thinking he has classic autism (or PDD-NOS), for the following reasons:

• The definition for Asperger's includes, "...has no clinically significant general delay in language." JF definitely has a language delay.
• I'd had the impression from my other research that a child with classic autism completely blocks out the world. I thought, my son can't have classic autism, because he does smile, laugh, hug, and so on. Perhaps I'm guilty of an over-generalization in this case, because this book's definition of classic autism includes, "...shows impairments in...social interaction" which is fitting in JF's case, and a far cry from completely blocking out the world.

I've also read the Koko Bear book to JF, while he was on the potty, and he seemed to like it. I like the fact that Koko's gender is not specified. Koko could be a girl bear or a boy bear. It's hard to avoid saying "he" or "she" throughout a book, but Vicky Lansky did it!

My creed

I firmly believe that everything happens for a good reason.

Every anxiety, every pain, every loss happens for a good reason. I came to this conclusion shortly after my mom died in a car accident on May 21st, 1993. I was 19 at the time, in college.

I had been raised Roman Catholic, but I've always been very skeptical. Heck, I didn't believe in lightning until I saw it myself. So I've always wondered about the Trinity. Sure, it's a nice story, that Jesus died for our sins. But is it true? So many people have died because of religious fervor, and continue to do so. I believe that religious beliefs should be well-justified, considering the weight that they carry. When Mom died, I asked myself whether there is a god, and if so, what kind?

It came down to my need to believe that Mom's death was for a good reason, even though I don't know what it was. Assuming this is true, then there must be some higher power, who is all-powerful, all-knowing, all-good, and concerned with every detail of our lives. I call this higher power God, and I use the male pronouns, because that is what I'm accustomed to doing.

I also believe that prayer makes a difference. God knows what each of us wants, but we need to tell Him those wants, if only in thought. Consider a practical perspective: If you put your wants into words, then you are more focused, you can more easily prioritize your life, and you can more easily discipline yourself to do what you need to do. Seek and ye shall find.

Sometimes, when I'm trying to put my prayers into words, I get all tangled up thinking, I should ask for this, no I should ask for that, no that's not important either. More and more lately, I just end up thinking, "God, help me to do Your will." It doesn't help me to focus, prioritize, or discipline myself very much, but maybe that doesn't matter.

Disciplining a 3.5-year-old

A few months ago, the issue was spitting. It started because we were trying to teach JF how to brush his teeth, and of course, one step is spitting into the sink. Unfortunately, he took a liking to spitting, anywhere, anytime. The daycare sent home a note that he was spitting on the table and smearing the spittle around like fingerpaint.

Each time we caught him spitting, we said, "No spitting here! Only in the sink!" and then either led him to the sink or distracted him. He gradually dropped this habit.

Then, a classmate of his in daycare was hitting, pinching, kicking, and generally being a wild child. Wild Child was kicked out of daycare, but not before making a big impression on JF. JF started hitting, pinching, kicking, and so on. But he always does it with a smile. He doesn't do it out of malice. We think he just doesn't know the difference between nice things like "Gimme five!" and mean things like a slap in the face. He also thinks it's funny. (Sometimes, even when I'm in pain, it's hard not to laugh with him.)

We tried the response that worked with the spitting: "No hitting!" and distraction. No dice.

We tried "No hitting!" and showing him how to be gentle (taking his hand and patting my face with it). No dice.

We tried "No hitting!" and walk away. The idea was that if he can't be nice to us, he won't enjoy our company. No dice.

We tried scaring him by yelling "No hitting!" at the top of our lungs. He laughed harder, which made us angry. We decided to drop that tactic because we were afraid of what we might do out of anger. (There's an Incredible Hulk in all of us: "Don't make me angry. You wouldn't like me when I'm angry.")

Our current strategy is "No hitting! If you hit me again, no more Thomas the Train!" and then follow through. The trick is to plan ahead. If I take away crayons, pencils, his magnetic drawing board, and play-dough, then there is nothing left for him to do during his twice-daily nebulizer treatment. If we threaten to take away his train just before bedtime, and he doesn't hit a second time, then we have to let him play with his train, even though it's bedtime. So the only thing that we can take away from him at bedtime is his bedtime music (lullaby CDs).

I'm not sure whether this is working.

His PEP teacher said we should (1) say "No hitting!" and show him how to use gentle hands, as we had tried before, (2) if he continues to hit, send him to a "get ready" chair, and (3) if he continues to hit or won't stay in the chair, then take away a favorite toy. The "get ready" chair seems like a good idea, except that most of the time when JF hits me, it's when I'm trying to get him ready in the morning (I don't want to be late for work), or I'm sitting with him while he sits on the potty (I don't want him to pee on the "get ready" chair), or I'm getting him ready for bed (I don't want him to lose sleep).

His PEP teacher also suggested we show him picture communication symbols for "No hitting!" and "Gentle hands" to help him understand visually. She said she would send these symbols home with him, so we're waiting for that.

I saw a bumper sticker once that said, "Please be patient with me. God isn't finished with me yet." JF will eventually drop this bad behavior, but in the meantime, we have to be patient with him.

1/12/06 update: I attended an autism support group last night, and there were two suggestions: (1) Catch him being good/gentle and praise him for it. We've been doing that, but now I'll do it more! (2) When I'm getting him ready for school or bedtime, I should try to keep myself calm, because he will pick up on my anxiety. He might be hitting me because he doesn't know how to handle the anxiety. If I get worked up and/or he hits me, I should take a deep calming breath, and teach him the same. I was trying both ideas this morning, and maybe they worked, because he hit me only once.

The PEP teacher said that I really must use the "get ready" idea, but it could be a "get ready" spot in the bathroom that he stands in, long enough to say "Sorry, momma". He shouldn't be allowed to get out of activities just by hitting me. I tried that this morning, too, and maybe it helped, because he didn't hit me again.

Potty-training a 3.5-year-old

JF had been having about one success per day for months now. He understood most of the concepts (except he sometimes says poop when he means pee), but had no motivation to make progress. We had also been giving him a sticker for each success. He seemed to like the stickers, but he never asked for them, even after peeing on the potty.

A few weeks before Christmas, I attended a potty-training-workshop given by the PEP program. Five or six other mothers attended, mostly representing four- and five-year-olds. One method that was recommended was "Potty Island" where you lock yourself up in a bathroom with your child for three or so days in a row, and let him eat, drink, play, and especially drink to his heart's content. And keep him barebottomed during all of those waking hours.

A friend of mine called it a "fairy tale" to think that you can potty-train a child all in one weekend. To a degree, I think she was right. But we've been preparing him for months, teaching him about pee, poop, potty, and toilet paper, teaching him how to climb up onto the potty, look at a magazine on the potty, flush, wash hands, pull pants up and down, and take his own daiper off. He was ready, but it just hadn't clicked yet. I figured Potty Island was worth a try.

We tried it New Years' weekend. We extended the "island" to include JF's bedroom, because our bathroom is so tiny. He had accidents, of course, but those were opportunities for him to learn. On the third day, when he started to pee on himself, I called out, "Time for potty!" He ran to the potty, leaving a trail of pee droplets on the floor. That was progress, because I didn't have to pick him up and bring him to the potty myself.

The next sign of improvement was at bedtime, when he wanted to put off going to bed, he said, "Poop on the potty?" It was just a delaying tactic, of course, but it meant that he knew it was important to us.

We also started giving him one M&M after each success, because he loves chocolate (just like his momma). He started asking for an "M" after peeing. That was another sign of progress.

The past week has been a roller coaster ride: The first day after Potty Island, Tuesday, he had only one accident! I was amazed. By Sunday, he was having three accidents each day. I was worried that the Potty Island venture had been a failure. Today, however, he had an accident-free day at daycare and PEP, and had only one accident at home! He peed on the potty twice this evening, after dinner and before bed, earning an M&M each time, and we lavished him with praise. I told him that I'm proud of him for keeping his underwear dry.

I hope JF has turned the corner. He'll probably still have accidents, but that should gradually decrease over time. Then we'll work with him to poop on the potty and stay dry all night.

One thing that I've read is that you should make your child say "goodbye" to daipers as soon as you have switched them to underwear. Then they say, don't worry about night-time training until after your child can stay dry all day. This makes no sense to me. How can you say goodbye to daipers if you still need to use them at night? We'll save that goodbye for later, when he can wear underwear even at night.