another day in the life of Henry and his mom

So last week we visited the doctor twice for Henry's ear infection, and on Friday were assured that it was all cleared up, and that the remaining coughing, runny nose, and general unhappiness were the virus that was running its course. Yesterday afternoon Henry seemed pretty worn out by the end of the day, but I dosed him up with Motrin and we went to his swimming lesson.

Last night as Henry was falling asleep, he asked me to rub his right ear (the left was the infected one). He kept saying that it hurt, and kept wiggling his legs the way you do when you're in pain- writhing would be the way to describe it. Henry NEVER complains, which is one reason it's hard to figure out what's wrong with him. This was the most discomfort I had ever seen him in.

I suspected swimmer's ear. I called the doctor on call, but by the time he called back, Henry was asleep. This morning I gave him Motrin again and sent him to school. I feel sick with guilt about doing that, but I just can't miss weeks of work at a time when my kid has a series of cold symptoms, and maybe has swimmer's ear.

His teacher called me at around 11:15 and said that Henry's balance seemed to be off- he was bumping into things and almost fell over when he stood up to go look at his picture schedule! I was pretty close to getting hysterical. Although I know that ear problems would of course affect his balance, I was sure that it was something much more horrible and rare...

When I picked him up at school he climbed up on my lap and vomited on me. His teachers put him into his spare clothes, but I of course had none. It was noon, and we couldn't see the doctor until 1. So I stopped at TJ Maxx, right down the street. (Shopping with vomit on my work clothes. I have no shame.) In the checkout lane Henry started seeming like he was going to throw up again. So I left my cart and bolted out to the parking lot. He threw up, I put him in the van, drove up and parked right by the front of the store, went back in and finished my purchase. Luckily I had bought this soft fleece blanket, because Henry needed to take off his shirt. I took him into the doctor's office with no shirt, wrapped in a blanket.

The doctor confirmed swimmer's ear and gave us some drops. When we got out to the car, Henry vomited again, on the new blanket.

We stopped at Border's to buy a copy of the just-released-today Lady and the Tramp Special Edition. (Henry always says the "special edition" part.) He waited in the van again.

We came home, he threw up again, watched Lady and the Tramp, and then he fell asleep in my lap. I'm sorry that he is feeling so bad, but it's been a long time since he fell asleep in my lap like that. I sat and looked at him for a long time, thinking about all the times I've gazed at that sleeping face.

I'm not sure whether he has another bug that's causing all the vomiting. The doctor said that if he's in that much pain, it may be enough to make him throw up. Swimmer's ear is about one of the most painful things a child can go through.

I just hate when we have stretches like this, where it seems like he just can't get healthy.

church

We attend this church. Bill grew up attending here- I think his grandparents were even married here, as were his parents and his sister. We were not church-goers at the time we got married (and were married in a park shelter house on a rainy day), but started back to Trinity when Henry was an infant and Kate was 9 or 10.

Things went well when Henry was pre-school age. He would spend the first 2/3rds of the service in the nursery and then come down for communion, another prayer, song, and dismissal. But once he was old enough to go to Sunday school, our troubles began. Really I should say my troubles, because as I try to write about this I realize that some of this stuff is all in my head.

The Sunday school program is very small and I felt unsure about how Henry would do in the class. I didn't want to stay there with him, though, as I felt that would make Henry seem or feel more different, or make the other parents/teachers think he was un-managable or un-teachable. I should have just had a talk with the teacher. But at the time, Henry did not yet have a diagnosis of any kind, so it would have just been me saying "my child has speech delays and you have to say things to him in just the right way and sometimes he won't want to participate and will just want to do a puzzle in the corner. OK?"

He couldn't tolerate an entire church service, and I refuse to have him go to the nursery when he's clearly too old. So we just didn't go to church much. Which was a disappointing solution for all of us. This fall we decided to give it a try again. Unfortunately, the church was being remodeled at the time, so services were being held in the basement, in the coffee hour area, rather than the majestic high-ceilinged, stain-glass-windowed space Henry was used to. That was a disaster. He kept loudly proclaiming that he wanted to go back to the "red room" (the main front doors to the church are red.)

So for the past 5 months or so, Bill and I have been alternating Sundays- one of us takes Kate and Thomas to church, the other one stays home with Henry. It has worked ok. But yesterday Bill had a basketball tournament game, and I had been asked to watch the nursery. So Henry came along to church.

We were all excited to see the re-done sanctuary, which was just re-opening. They had a brass trio or quartet playing. I stopped to have the boys look at the beautiful church and listen to the music. Henry wanted to sit right down in a pew, but I had to force him to come upstairs to the nursery. While we were up there he kept asking to go back down to church, "say a prayer and sing a song." Almost the entire service is printed in the bulletin, so I started reading that to him. He sat and listened attentively, and when I had to get up to play with the kids, I saw him "reading" the bulletin on his own.

Then I tried to sing a song. The first one that came to mind was the Hallelujah chorus from "Messiah". I started singing that, and Henry said "No. We are marching in the light of God." That is a song that we sang months ago, possibly the last time Henry had attended church. And he remembered it. My heart was so touched, and I also felt a little twinge of guilt (don't we always?!)

He really enjoys going to church, and I should not keep him from it. Have any of you found ways to make church (or going to movies, or any other hour-plus need-to-be-quiet situation) work for your ASD kid?

Should we just muddle through Sunday school? Maybe it will go better now that Henry has established some good habits at school. And I might have better information to give the Sunday school teacher.

miscommunication

I always cut Henry's hair myself, when he's in the bathtub. He doesn't like having it done, especially the part around his ears and close to his neck. A few months ago, when I was trimming his hair, he moved suddenly and I poked him around his jawline, near his ear. It hurt a little and bled a little and I felt terrible and apologized profusely.

So this weekend I was cutting his hair again, and the elephant who never forgets said "I don't want you to poke me." I said, of course that I wouldn't and I was very sorry that happened before and that he needed to sit very still. (Which he did, so maybe the little injury made a point- ha ha, funny pun, eh?) Anyway, he wanted to keep talking about the poking incident. He said "I'm sorry I poked you." (Wanting me to repeat that, which I did.) Then he said "I poked you right in the eye."

I was a little irritated that he was revising history to make my mistake even worse! I can only assume that he's heard that phrase- "poked right in the eye"- before and was using the whole string of words, not realizing that he should say "poked you right in the face" or something else that would be more accurate.

Anyway, it was funny because he kept repeating that I had poked him in the eye with the scissors, and I kept getting more panicked and trying to correct him. I sure hope his teachers don't believe everything he says!

stuff bouncing around my head today

-Henry's ear is infected again. Last month when this ear was infected, it was draining. I saw one doctor in the practice, and maybe I misunderstood him- I thought that the tubes Henry got 3 years ago were still doing their job. Henry didn't seem to be in any discomfort, but just had this gunk coming out of his ear. Now this time he is really miserable, but the ear is not draining. We saw a different doctor, and when I asked why it wasn't draining, he said that last time was a worse infection, which had perforated the eardrum. That this infection wasn't as bad. (So why does Henry seem to feel so much worse?!) I just hate leaving the doctor's office more confused than when I went in!

Henry did not cooperate as well with the doctor this time (surely because he felt like crap). We have to go back again in two weeks to make sure the infection's gone. Am I starting this whole thing again???!!! One ear infection after another until my child needs surgery? Ugh.

-Lots of times Henry is more agreeable for his sister. When she is able to help get him dressed or give him medicine I am so relieved. Yesterday morning (which, no surprise, was frustrating for me) I asked her to start getting up earlier and helping me with Henry in the mornings again (I didn't ask during basketball season.) This morning she did not get up. And Henry specifically asked for her to give him his medicine. I went in her room and yelled at her. Now, I already feel bad when I do that- both frustrated with her and also with myself for "losing my cool." But let me tell you what makes a crappy morning even worse: when you come back downstairs after yelling at your teenager and your sick, pitiful, 6-year-old PDD kid looks at you with wide, sad, eyes and says "please stop arguing."

Oh my God. I wanted to crawl into the cupboard under the sink and just stay there for awhile. Henry has always been so sensitive to the emotions of others. He becomes upset whenever anyone in his vicinity is upset. Do any of your kids seem to be ultra-sensitive to emotions?

My dad, who seems to share some of Henry's traits, says that when he walks into a room he soaks up the emotions like a sponge. Because of that, some situations just prove too much for him and he has to shut down or get out of there. It's clear that Henry shares that ability.

I was actually, once I could think about it clearly, proud of Henry for using those words. I told him that I was just frustrated because Kate wasn't listening to my words, and that sometimes people in families get frustrated with each other, blah blah blah. So he will probably go to school today and say "I want my mommy to stop arguing" and his teachers will all think I'm a psycho.

-Henry's teacher sent home a form that I had not seen before, but that I found helpful- a pre-planning sheet for his IEP. I had to send it back in today but asked to get a copy back and then I will share some of it here.

-Sal posted something from someone else's blog. I frankly didn't read the whole thing because I got upset around the part where it's revealed that the kid's autism is all the mom's fault. So sorry. But there was some discussion of hugging-type therapy, and that I can relate to.

Henry really likes to "roughhouse". Tickling, rolling around on the floor, climbing on his dad or me, etc. And the urgency with which he sometimes solicits it makes me think that this physical contact serves a very basic sensory need for Henry. I wonder if any other kids seem to really need to have an outlet like that? Henry does like to snuggle too. But the roughhousing thing is different. It's like he can't let it go, even once the other person has made it clear that s/he is finished with the roughhousing. Or he'll do something weird, like try to put his foot in your mouth. You push the foot away, but he just keeps doing it, again and again and again until someone gets mad.

I'm very intrigued by the whole thing and wonder what purpose it serves for Henry, or how to better meet that need. I suppose I could meet with a sensory integration specialist or whatever they might be called.

Happy Birthday Thomas

Dear Tommy,

When I was pregnant with you, I often told other parents that I hoped the second baby would be "easier". Not that Henry was a difficult child at all. But he did have his health problems. And those, added to all the weirdness that comes with being a new mom, added up to some stress for me.

I hoped that this time it would be "easier" because we would be more confident. We wouldn't be as scared and unsure. I wanted to enjoy you more. (Does every parent want that? Is that part of why we keep having more children? To try to re-capture the babyness and "appreciate" it more? It is so fleeting.)

So, today you turned 2 years old and I wonder how that happened. I have appreciated you, every minute of every day, but yet you still grew out of a baby and into a toddler. Right before my eyes. Lately I have been thinking about it and wishing that you could stay this way a little bit longer. Your godmother wisely reminded me that 2 years old is great, but so is 8 years old. So I guess I'll let you keep growing up. (Yeah, right, as if I have a choice!)

So far raising you does seem a little "easier", as far as the worrying goes. But it seems more bittersweet. (That is a word that a lot of my mommy friends use.) With Henry it seems like I just jumped right into motherhood and floundered around. With you, the road is more familiar, so maybe I have more time to look around me and enjoy the scenery.

You are so precious to me- truly, almost everything you do leaves me grinning like a love struck drunk or something. Even in church when you declare "take shirt off" and then start jumping on my lap like I'm a trampoline. Or when you won't poop in the potty but then poop on the floor and come to tell me. I want to document some of the extra-cute things you do, so that I can always remember:

You like to say "Oh! See mommy, see!" And then show me a toy or a book or whatever. Sometimes you say "Oh mon!" and you sound Jamaican.

Every once in awhile, when the stars are aligned just right, you put your face very close to mine and give me a kiss on the lips, without me even asking! L told me that one day you did that to her and said "I love you."

You like to hop up and down a lot-especially to entertain the "babies" at L's house. You love babies, which always amuses me, because I think you are just a baby yourself.

You never want to sit in your booster seat, but always at a big chair at the table, just like Bubba.

Sometimes you say "OH! Mommy- turtle scare me!" But I don't think you're really that scared, because you keep on watching the turtles.

You like to "roughhouse", especially with daddy and Bubba.

When you sneeze, and I say "God bless you", you always say "God bless you too Mommy." When I say "you're a neat kid, Tommy" you say "mommy neat kid."

You are different from your brother and sister in that you will try new food without missing a beat. In fact, whenever I am trying to eat anything, you climb up on me and say "my do, my do"

Lately you have wanted to climb up and jump. From any piece of furniture or even something like Daddy's lunchbox. Sometimes you count: "one, two, three, seven, eight, nine, ten! JUMP!"

I think you had a fun day today. You seemed to sort of "get it" that it was your birthday. We hung up the "happy birthday" banner and you were pretty excited about that. You pointed at it and said "ABCDEFG!"

You waited at the door for Grandma and Grandpa to come. Tanner and her mom got you that water table that really seems to be for outside in the warmer weather. But I filled it up in the laundry room and let you play in it. Then I emptied it out, but you got Grandpa to fill it up for you again. I wonder where I learned to be such a spoiler?!

You enjoyed blowing out your candles, and got your Grandpa to re-light them at least a dozen times and then help you blow them out, over and over. Finally I told you 2 more times, but then wasn't paying attention. Henry was sure to point out when your two more times were up!

You had a great day, but didn't have a nap. So it was an early bedtime tonight. Today you gave me lots of hugs and kisses. I told you that I loved you and that I'm so glad you came into my life 2 years ago. You have made me so happy.

I promise I will always love you this much.

Happy Birthday.

I finally got another roll of film developed and put on a disk. Here are the boys admiring the zoo map, hung up next to Henry's bed. Henry loves to hold on to the map and study it while we're at the zoo. Last time he noticed the 10-foot-tall version of the map near the front gate and said "you want that poster to hang in your room." Imagine if the zoo sold billboard-size posters of their map! If we all lived in Henry's world, they would. So, I offered to hang up the smaller size map. I was happy to catch them both admiring it together, and talking about the different areas we had visited.

I have been in a reflective mood lately. (Is that the right word? Kind of sounds like I'm covered in reflective tape.) This month marks Tommy's 2nd birthday and the 13th (!!) anniversary my first date with my husband. It was also about a year ago that Henry left his first preschool and started attending the half-day special needs class, which was an equal disaster.

On that note, I will talk about our conference with Henry's teacher: It was a beautiful 40 minutes, filled with "he's doing really well. I love having him in my class. All the service providers agree that his behavior has improved 100%." Stuff like that. She feels that he is ready to start "inclusion" with the regular kindergarten class. They will start off by joining one of the special areas: art, music or gym. Ms. H asked Henry every day for a week which one he would like to attend, and every time he answered art. So he will start attending art class with the kindergartners ASAP. Ms. H will be with him the entire time.

His reading and math skills are coming along well, right in line with regular kindergarteners, according to Ms. H. And his aggression is almost totally gone. He did have one incident last week when he BIT another child! We've had lots of problems with scratching and pinching, but never biting. I asked Henry about it, and he said "you were being a snake!" So I mentioned that to Ms. H, that it sounded like Henry was pretending when he bit the other child. She kind of smiled in a knowing way (not unkindly) and said "I don't think he was pretending." So I can't figure that out- I know I'm a big sucker, but does he have me that fooled? Did he lie to me?

because I love you

To celebrate the sappy and sentimental holiday today, I thought I would share some sweet gestures my kids have shown me lately:

-One day last week I was kneeling down, helping Henry get dressed for school. He looked at me and said "you want a hug." Then he wrapped his arms around my neck and climbed onto my lap. I think he was watching tv over my shoulder, but I don't care. He stayed that way for a long time, giving me a real hug. I started rocking back and forth. Then I felt Henry start to rock too. What could be better?
-Kate bought me flowers at school one day- they were selling them for winter homecoming. A pretty bunch of purple-ish mums. She called to be picked up from basketball practice and asked if I could pick her up (as opposed to her dad, who had answered the phone). Then when I got there she pulled them out of her sweatshirt pocket to surprise me.
-Lately when I pick Tommy up and put him on my hip, he reaches his little hand around the back of my neck and twists it in my hair. I love this! Even though his hand is often sticky and he tears out pieces of my hair, I still love it. I will have to keep growing my hair out.
- OK, this isn't so sweet, but is funny: I dug out an old pair of Henry's sneakers, the next size up from what Tommy is wearing now. They feature Blue's Clues. Thomas found them and was SO SO excited. He insisted on putting them on right away, and has worn them to bed the past 2 nights. I have to wait for him to fall asleep, then go in and take them off. If he does it again I will have to take a picture. My son is so under-privileged that he is this excited about hand-me-down shoes. Wait 'til he figures out that he can go to the store and actually pick out a new pair!
- Henry's little class is having a party today. Thank goodness there are only 4 other kids in his class, because his enthusiasm for addressing valentines was maxxed out after 3 + one for his swimming instructor. But I was very happy with the 4 he addressed with my "assistance." They will be having Wendy's for lunch today for their "party." Tomorrow afternoon Bill and I have our conference with his teacher.
- This morning in the shower I heard James Taylor's Your Smiling Face. That is one of those songs that always make me think about my kids and smile, and it set the perfect tone for Valentine's Day. What are some songs that make you instantly happy when you hear them? I'm going to think about this today and add others as I think of them...

the downside to using his words

I'm so happy with Henry's language. He says beautiful things all day long that I try and try to burn into my brain so I can remember them and write them down- but they're gone by the time I get here. If I could only drink caffeine!!

But some days all those great words serve to torture me. Like a couple weeks ago, when I discovered some dried crud in Henry's ear and we visited the doctor. Henry chatted, in his unique way, with the pediatrician, and was doing great while the doctor listened to his heart, etc. (The pediatrician's office has historically been the scene of much screaming and crying for Henry.) But when it came time to look in the ears, Henry backed away from the doctor and let out a whine.

So I hopped up and said "let me give you a hug" and held him tight while the doctor looked in the ears. As I was squeezing him tight, with my ear against the top of his head, the whine turned into "Please stop. Please stop. Please stop. Please stop." Those words cut me like a knife. I would rather hear the crying and screaming. I kind of mumbled "good job using your words Henry." gulp, choke.

When we left the doctor's office, I told Henry that we would go to Kroger to get his prescription filled. I failed to communicate that first we needed to make about 4 other stops! (Pick up Tommy, get Kate at home, take her to basketball practice, put gas in the van because it was REALLY on empty.) So the entire time we were making all those other stops, Henry was chanting, non-stop, "you want to go to Kroger. I want to go to Kroger mommy. Mommy, I want to go to Kroger. I want to go to Kroger please..."

Even better, his little shadow started chiming in "yeah, troger mommy, troger. TROGER MOMMY TROGER NOW!"

I never imagined I would say this, but that particular day, I just wished Henry would stop talking!

overheard this weekend

(Cough, cough from upstairs)

Bill (calling up the stairs): "Henry?"

Henry: "Yes Daddy?"

Bill: "Are you OK?"

Henry: "Yes Daddy."

Bill: "Good. I love you buddy."

Henry: "I love you too Daddy."

That may seem like a pretty boring exchange to some of you, but would not have happened at our house 6 months ago. Bill came smiling around the corner and said "did you hear that?!"

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(Tommy is carrying around something of Henry's)

Henry: "Tommy, may I have that please?" (Said in a quiet voice, not the house-on-fire voice that you might expect.)

Tommy: "Bubba, here go." (Hands it over.)

Henry: "Thanks Tommy."

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These are the little things that autistic kids need help with. These are the things that his teachers work on all day, every day. And it's working- he's getting it- it just takes a lot of time and a lot of persistence and a lot of patience.

I've realized that a good, quick way to explain the differences in parenting these two boys is this: I can tell Thomas "oh, don't touch that Tommy, that's not safe." And he's likely to stop touching the thing and reply "not safe mommy." (That's not to say that he listens all the time, of course.)

But if I were to say the same thing to Henry, especially when he was younger, he would have responded by screaming at me. Either because he didn't understand the concept of "not safe" or because he thought he was in trouble, or because he just didn't like being told "no"... I can't say why exactly.

But parents of autistic children sometimes have to find sneaky ways to communicate with their kids. We have to pussyfoot around saying "no", or trick them into stopping the thing they're doing, or into eating something new. That's what's so exhausting about it. And hard to make others understand.

Henry and I have to go through this little ritual when he takes medicine. It's MUCH MUCH MUCH, a thousand times easier than it used to be. But still, we have to talk about how he doesn't want to take this medicine, etc. Several years ago he was prescribed some cold medicine that was purple. Ever since, every time he takes medicine, he says "which medicine do you like the best?" (wanting me to pose that question to him) So I ask him, and he responds "the purple medicine." Then he opens his mouth to take the current medicine. Why do we have to have this little exchange every time? It somehow comforts him, or makes him think all is right with the world, if we talk about the purple medicine first.

Getting in the car in the morning is similar. Bill is already at work, so every day Henry says "you miss your daddy." And I have to figure out which of the responses will comfort him today: "He's at work." "You'll see him later." "He misses you too." "I miss him too." "We'll all be together tonight." I try a couple of these and then Henry repeats the one he likes. Then I tell him I love him and shut the car door.

I'm trying to keep a notebook around so I can jot down things that both the boys say. Here's one more:

Henry: "You want some jigsaw fruit."

Kate: "Jigsaw fruit? What's that?"

Henry: "It has cherries and pineapple and peaches and grapes."

Jigsaw fruit = fruit cocktail

Um, Sal? The next time you decide to kick your sadness out, could you please specify that it not find a new home in the midwest? But rather maybe across the Atlantic? Or in the White House somewhere? Because I'm afraid it's trying to shack up at my house, and I really don't have room for it.

I know, I know- read my own stupid "good things" post, and get over it.

It's just that the past couple days have been extra hectic and Henry's taking an antibiotic (duh, he hates it), Tommy needs drops in his eyes because some kind of eye crud is going around L's house, and...

Henry's driver got in an accident yesterday, before she had picked any kids up. She's ok, but that meant that yesterday Henry had to take his antibiotic AND get picked up by a different person in a different car. Whoa. Today she was back, but in a different car. "You don't want her to be in this white car! You want her to be in the black car!" Everything I said this morning was met with brilliant opposition by Henry. "It is not a school day! Tomorrow is a school day! It is not Wednesday! It is Thursday!" (That argument is a little flawed, as he would still have to go to school, whether it's Wednesday or Thursday.) "Do you want to just wear this shirt over your jammie shirt, so you'll be a little warmer?" "You will NOT be warmer! You will be COLDER!" "The chocolate donuts are NOT gone!"

Thomas didn't sleep very well last night- I kept bringing him in to our bed, but he always ends up kind of making an "H" between Bill and I, kicking one of us and slapping the other, like we are both in his way. How do some of you sleep with your kids every night? Tommy beats us up all night- as if we are in HIS bed, not the other way around.

OK, I always feel like I need to end on an up-note. So last night was "parents night" for the basketball team. Each player gets introduced along with her parents, and we walk out in front of the adoring crowd, shake hands with the coaches, and each mom gets a long-stemmed carnation. Some stress was caused by how we were going to coordinate this (I suggested we just bring the boys out with us, but Bill thought that might steal some of Kate's limelight or whatever). But it all worked out, a friend was able to watch the boys during that portion of the game. So the funny thing was that right before the boys and I left for home, Kate came up and asked me for some money. A woman next to me said "you're that girl's mom? You look so young!" So that was a nice compliment, but I was laughing because, not only had I been introduced earlier as Kate's mom, but I was also wearing a dorky black t-shirt that said "Kate's Mom" in big white letters on the back! Did that woman think I was masquerading as a teenager's mother?

OK, thanks. I feel better now.