I have a friend who faithfully gets these elaborate photos taken of her daughter. Last time she asked if Tommy would come along too. (I won't share any of the photos of them together, as I haven't asked for her permission, but they are very cute.) Are these great or what?! I'm so glad she invited us along, because I would sure never pay this much for photos, but I'm glad to have them.
(That's my leg that he's leaning against.)
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Mamaroo asked about our summer plans. For the third summer in a row, Henry will be attending the Easter Seals summer program.
His first summer there was wonderful. Last summer was pretty rough (he was coming off of his really bad preschool experience.) I am not sure what to expect for this summer, but will of course plan for the worst, hope for the best.
The program is open to all sorts of kids with disabilities. So you have children who are blind, physically disabled, and various degrees of neurological and behavioral issues. The problem, for Henry, is that some of the kids tend to be loud, scream unexpectedly, try to run out of the room, etc. That level of noise and confusion is very dysregulating for Henry. (And would be for many of us!)
One wonderful constant has been the teaching staff. He will have the same young woman (a college student, I'll call her Miss S) as a teacher again this summer. I got in touch with her through e-mail this week and gave her Ms. H's phone number and e-mail address. Ms. H said that she'll be happy to help with suggestions and will be available throughout the summer if any problems come up that she could help with. I'm hoping that Miss S will have time to visit Henry's classroom in the next couple weeks before school is out, to see how they do things there.
Thomas will continue to go to L's house for the summer. She will take 2 weeks off in July, however, which means that I'll take 2 weeks off in July.
Kate will be getting her first job this summer, and will be busy with basketball camps and leagues, maybe volleyball too.
So that's the plan for the summer. I have a question for all the mommies and teachers out there: what is a good teacher gift that is useful and appreciated? Especially since we know that Henry will be in a different class next year, I'd like to get something nice (not necessarily expensive :-) for his teacher, and maybe the aides in his class and the woman who drives him to and from school.
When Bill's schedule permits, he meets Henry at home after school. (More often his schedule does not permit, and I meet Henry at home.) Friday was a daddy day.
They called me at work to check in, and I asked Henry, "how was your day?" I expected him to say "it was super good!" Or, "I had gentle hands almost the entire day." Or, "I played Nick Jr. on the computer."
Instead he replied "I got a gluurb."
"A what?" I asked.
(Louder) "A gluuuuurb!" (Henry does that thing that some Americans do when speaking to a non-English speaker: just says it louder and more slowly- thus making his words less intelligible, rather than more.)
"A glob?"
(Exasperated pause...) "A wuuuulrd"
"A word?"
"A wuuuulrd!"
"I'm sorry buddy, I'm not understanding your words..."
Then, finally, he shouted "the earth!"
This globe/ball had been waiting for him in the mail. We got it with our new subscription to National Geographic Kids. It was not something that I anticipated him talking about. But once he tried a third way of getting his point across, I was so excited to finally figure it out! I was even more excited when I found out that he had been reading the names of the continents and countries to Bill.
Henry did more reading this weekend. He was looking at a cookbook and sounding out a surprising number of words- things like "country apple pie". Sometimes he thinks he would rather work in a bakery than be a con/destruction worker.
Also- some good news/bad news:
Right now Henry's (super-excellent-terrific) classroom is located in a different school district, and he is transported there. We just found out that they will be opening a STACK classroom in OUR district next year. It's one of those old school buildings where the elementary, middle school and high school are all connected on one long block. So it will be like he's going to school with his big sister!! Potentially she'll be able to get him home after school at least some of the time, and I won't have to leave work every day from 2:30-3:30. It will be so much easier for me to have contact with his teachers and participate in school events. I mean, it's 80% a good thing.
The 20% bad is just this: he's had so much success this year, and we love his teacher so much. I am just afraid to give that up and start over. And it makes me wonder: how many other times are we going to have to start over in his educational career?
Bill and I have noticed a strange phenomenon, thanks to the birth order of our children: because our autistic child was born first, we delighted in his development. We were pretty much serenely oblivious to Henry's developmental delays. (It helped that the pediatrician kept saying that he was fine.) But now, as we watch our NT toddler grow, we are completely enchanted by his development.
I think that, for many families, when their second child has an ASD, they are likely to be noticing all the things that infant/toddler is not doing: not using imaginary play, not participating in reciprocal conversations, not expressing his wants and needs verbally, not showing interest in other children.
For us, the opposite is true. Lately we find ourselves laughing at Thomas' antics and amazed by his verbal abilities. It's like, rather than thinking that Henry had a disability at the time, now we think that Thomas has some kind of uber-ability!
Here are some of the fun things he has been doing lately:
-He is enjoying his toddler gymnastics class. He acts pretty shy and quiet during class, but then one night at home he started rolling all over the floor and couch, saying "I doing dymnastics! Hey, guys, watch me- I doing dymnastics. Guys, guys, tan you tlap? Tan you tlap when I do my gymnastics?" Wanting us to applaud after each stunt.
-One day we were waiting out front for a friend. Tommy noticed the neighbor across the street and said "there's Frank."
I said "yes, there's Frank. It looks like he's cutting up a branch. Hmmm, it looks like his tree is... well, no, maybe it's just late to bud." (I was just thinking out loud, at first I thought one of his trees was dead, but then decided not.)
Tommy looked at me and said "mommy, what you talking about?!" As if I was just a babbling idiot.
-He likes to pretend that he is a baby, and pretends to talk baby talk. He'll say "I the baby and you the mom and daddy the dad." OK Tom, that's not a real stretch for us. He will pretend that the ketchup bottle from the play food is his baby bottle.
-One day, out of the blue, he said "I Swiper." He grabbed my slipper and threw it and said "you'll never find your slipper now!" (For readers who aren't familiar with Dora the Explorer, that's what the bad guy Swiper does.)
That's just normal kid stuff. But Henry never did things like that. So when Tommy pretends to be Swiper? That totally blows my mind.
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Last week we had Henry's IEP meeting for next year. He will continue to work on goals that will allow him to succeed in the inclusion classroom. Aggression was our big focus this year. Now that it has been managed pretty well, they are concentrating on a couple specific things: Henry's reactions when other children are being redirected (i.e. disciplined), and learning to interact with his peers- initiating play and taking turns with less teacher involvement.
A couple exciting bits of news:
1. Henry's IEP doesn't have any specific academic goals because he is at or above grade level and will continue with the 1st grade curriculum next year.
2. They hope to increase his inclusion to up to 80% of his day next year. I actually half-joked during the meeting that this news made my stomach upset. Inclusion is not much of a goal for me right now, and I don't want to get my hopes up that Henry will attend the regular class next year and be "just like the rest of the kids." I mean, I know he may never be. But it seems like as long as he's in a "special" class, then that's easier to remember.
But if he's really part of the first grade class next year, I'm afraid I'll be disappointed if he doesn't make some friends and start getting invited to birthday parties, etc. etc. Or if it doesn't work out well and we have to start scaling back, then I'll be disappointed.
I just need to not have any expectations, and see what happens.
I've been thinking a lot lately about this business of being a mom. It started 2 weeks ago when Henry was so sick. I realized that it's a mother's job to interpret what the pediatrician is telling her- when to believe it and when to push for something else- when to say "ok, but..." when being advised to wait another 24 or 48 hours. I'm not very good at that. I want to be able to trust my pediatrician blindly. But I've learned, in 6 1/2 years of being Henry's mother, that the doctors don't always know a whole lot more than you do once you've read the American Academy of Pediatrics book. Sometimes you have to dramatize the illness to get attention. And I don't usually go for the drama in my life.
Then at the Emergency Room I had a few hours to think about all the things we do as moms. All the tasks you don't realize that you're signing up for when you say "hey, let's have a baby." Things like catching barf in your shirt because that's easier to clean up than the carpet. Things like holding your child down so doctors can examine him. Things like forcing your 6-year-old to drink out of a sippy cup like it's a bottle because he's so sick.
At a gathering at our house last weekend, a friend said to me "why doesn't anyone tell you how much motherhood sucks?" I kind of laughed her comment off, saying "oh yeah, if anyone told us how hard it was, no one would ever have children!" But, without going into this woman's personal situation, I believe that she really meant what she said: she thinks motherhood sucks. (Forget for a moment that I hate that word.) It really upsets me to know that anyone would feel this way. God knows that I am far from being an exemplary mother (I just put my boys to bed without a bedtime story or brushing their teeth so that I could get back on the computer) but I love being a mother. Every single minute of it. Even on my worst day or my kids' worst days I would never say that motherhood stinks (that is a word that I prefer to sucks.) Even a day spent in the Emergency Room is a day spent doing the most important job there is: helping a small person grow into the best big person he can be.
I can also say, after the past 2 weeks, that I tip my hat to all stay-at-home moms. It was never in the cards for us, financially, for either Bill or I to stay home. But after this week, I wonder if I could even handle it? I feel like I started 10 different projects (I have a lot of energy in the mornings) but didn't finish any. The TV was on all day long, and I ate like a pig (we had a lot of leftovers from Kate's birthday/confirmation bash last weekend.) The situation was a little unusual because Henry was sick and needed to rest- I suppose I would have done more active stuff outside if that hadn't been the case. But I commend all you moms who are with your kids all day long and manage to get so much done.
Today was a good day. We visited my parents in Dayton (about an hour and a half away). My brother was there visiting from Washington, DC. My mom, brother and I went to the Princess Diana exhibit at the Dayton Art Institute. I have been a Diana-phile since the royal wedding in 1981. I was 11 then and highly susceptible to the whole fairy tale thing. I got up at 4 am or something to watch the wedding and then went on to collect coffee table books about Diana and her kids. The year she died (1997) was the same year I got married, and I again got up at 4 am to watch her funeral. I sat on the couch under a blanket and sobbed. I know that's unbelievably corny. But I just couldn't bear the sad reality of her life, compared to the fairy tale that we all thought we were watching back in 1981. At the same time, I realized how wonderful my every-day normal person life was, compared to her life of palaces and designer clothes.
So I made mom and Christian go to this exhibit today and it was kind of a disappointment. We realized afterwards that the exhibit was put on by her family (the Spencers). So they were only able to show items from her childhood and then from her death (like hundreds of condolence books that were signed by people all over the world). The highlight for me was her wedding gown. But you walked out of that exhibit room and directly into one about her funeral. Nothing about her life in between. I guess that stuff is all owned by the royal family. There were very few photos of her sons. And my brother pointed out the irony of visiting a show about Diana on Mother's Day: her kids don't have their mother anymore.
Well, it's time to do another mommy job: wash Thomas' sheets. He is sleeping in our bed right now, because last night I found him asleep with his pjs unzipped, his diaper undone, and his bed full of pee. Why?
Christine brings up a good question: did I tell them at the hospital about Henry's autism?
It came up a couple times- first, when we were in the "triage" area, the nurse was putting info in the computer, and asked if he had been to Children's before. I said yes, that he had been evaluated in the autism clinic. She found him in the computer and continued with taking his temp, etc. She asked if he was diagnosed with autism and explained that she works with autistic kids. I answered "yes- PDD." But that was the extent of the discussion. Come to think of it, I wonder if she noted that on his paperwork? I kind of doubt it- she didn't seem to think it was a big deal.
Later, when the paramedics were attempting to take blood and insert the IV, it came up. I forget why exactly, but I think I was telling him he did a good job using his words, and then explained "he has an autism spectrum disorder and it's hard for him to communicate sometimes." The nurse who was holding him looked surprised and asked "he's autistic?" And then kind of shrugged- I'm sure because he was communicating pretty well with her!
It's interesting, in retrospect, that I didn't feel compelled to tell everyone we came into contact with about his autism. I know that it affected how he reacted to the situations, but I also know that many other non-autistic children would have reacted the same way, or even more violently.
Maybe because I was with him the whole time. If I had needed to leave him alone with a medical person it probably would have been important to explain some of his "issues". But hey, all kids have issues, especially at the emergency room!
Thanks for all your support, friends. Henry is feeling better today. This is the first day since April 28 that I didn't give him any ibuprofen. Yesterday at 1 pm his temperature was 103.8!! I called the pediatrician and they told me to wait 24 more hours. I was getting pretty fed up with that advice, but I guess it was correct this time, because today his fever is finally gone.
His fever is down but he is still tired and coughs a lot. He will be home all week, except when we go in to school Thursday for his IEP for next year.
Because he is feeling a little better he is being a little feisty. He has a new retort that I haven't quite figured out: "I said that before you did!" Like, I told him to be nice to his brother and he said "I said that before you did mommy!" (It seems related to "I already was nice to him yesterday.")
At the hospital, after the physicians finished a procedure; putting in the IV or taking the x-ray, they always told him what a good job he did. He would argue with them: "I did not do a good job! No I didn't!" (And truly, I didn't think he did a very good job- was not very cooperative. But since one nurse warned him not to bite her, I guess they get some pretty wild kids. I don't think Henry would have considered biting. He did a good job using his words.)
Also, I thought this was cute: the day after our emergency room visit, Henry said to me "that blood test hurt me. They used a sharp thing. You want me to tell you what that sharp thing is called?"
I told him it was called a needle.
Later that day my mom said that he told her about the blood test: "they used a needle."
Any thoughts on the Time Magazine autism cover story? I think it seems like a pretty good summary of issues, although too brief. I wish I could have read that when Henry was first diagnosed. It's informative but not hysterical like some of the articles were a few years ago.
They should do a story on autism blogs- and fly us all to New York for that retreat I've been wanting to have...
PS- re: the construction worker thing: Henry has been on that kick for a little while, but the funnier thing is that he actually pronounces it "destruction worker."
Henry has pneumonia. He and I spent this afternoon at the hospital.
The antibiotic has not seemed to be helping, his temp. has still been high and he has been coughing. The results from his urine sample turned out to be negative anyway. So today we went to the pediatrician again, and he sent us to the emergency room at Children's Hospital.
It goes without saying (but I will say it anyway) that today was not my favorite day of motherhood. Here are a few of the moments that threatened to make me FREAK OUT, except that I couldn't because then Henry would really be in trouble:
-In the triage area, when they put the little clip oxygen sensor on his finger- made me flash back to baby Henry in the NICU.
-When we first got settled in our ER room and I heard a child in another room start screaming "NO NO NO IT HURTS!" (I later found out that it was a girl whose teeth had been knocked out by a softball, and the doctor had to shove them back in!!!!!!) My personal hell would be to spend eternity in a children's hospital emergency room.
-When the doctor finally came to examine him, and Henry started telling him "I go to kindergarten Dr. Larsen. I do art and library and computer lab. I want to be a construction worker when I grow up."
-When the folks trying to take his blood and put in an IV said "whoa- look how big that vein is- that's a good one! Oh, wait, what happened? It collapsed. We'll have to try again buddy."
I had been needing to use the restroom for like an hour and a half, so decided to take that opportunity. I could hear Henry yelling all the way down the corridor: "please stop, please stop! You already checked my arm! My arm is ok! Please stop!"
When I got back to the room, the IV was in and taped to a splint on his wrist- another NICU flashback.
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They took an x-ray and found the pneumonia, although neither doctor had been able to hear it with the stethoscope. They gave him a dose of an intravenous antibiotic (I forget the name) and told me to continue the one at home also.
On one hand, I am relieved to finally know what exactly is wrong. We have a 7-year-old nephew who is a leukemia survivor, so Bill and I were imagining all kinds of awful things. But on the other hand, I am still very worried because our little guy is very sick. Please say a prayer or send some healthy vibes Henry's way. Thanks.
Henry's been sick again. When Henry's sick, I get this feeling like I can't breathe, or think straight. I mean, partly because of the sleep deprivation. But there's something else. It's like all my worst fears come out in a cloud to strangle me: Henry's always been so small and so fragile. He gets hit worse by illnesses than other kids. And that combined with the fact that he's not a great communicator just makes me hysterical. He has this random high fever with few other symptoms that made me think he caught some kind of mysterious exotic disease at the zoo last week.
He was sent home from school Friday with a fever around 101 degrees. Over the weekend we measured it at 102.6 a couple times, and 103.7 once (all under his arm). We went to see the doctor Monday. I carried Henry in and he whimpered on my lap the entire hour that we were there. In the end the doctor said his ears were fine, the strep test was negative, and he just has a virus that we need to wait out. They usually last about 72 hours.
OK, thanks. Except it had been about 75 hours already at that point, with no sign of improvement.
I talked to Henry's teacher Tuesday- I knew that the girl he rides to school with had been out sick and wanted to find out what had been wrong with her. It turns out she vomited in the car on the way to school one day (riding in the back seat with Henry). So that must be where this came from, except that she only missed 2 days of school, and Henry seems likely to miss 6. Poor little guy.
He keeps asking to go to the library, which is pretty funny. I'm like "buddy, you need to be able to walk on your own two feet and go to the bathroom on your own before we can make a trip to the library." And he lays there and looks at me with those glassy eyes and his too-rosy cheeks and says "I am feeling better mommy." Sure you are.
We went back to the doctor's office on Wednesday and saw a different doctor in the practice. A young woman this time, fresh out of med school and a new mother to boot. I find that new doctors and female doctors seem to take their time a little more and be more sympathetic. And Henry responds much better to them. He let her check his ears, mouth, feel his abdomen, all with no protest and no help from me (a kind way of saying that I didn't have to hold him down.)
I mentioned that he has been wetting the bed, and that prompted her to check for a urinary tract infection. Instead of stealthily trying to get Henry's urine, I made the mistake of explaining to him "you're going to go pee pee in this cup. And we're going to give it to doctor H. Isn't that funny? That's kind of weird, huh?" And he's looking at me like I'm crazy if I think he's going to cooperate with that.
I begged him several times to go potty, which he of course refused. He also refused to drink anything- smart kid. He kept saying "you don't want it out of a cup!" And I started to realize that he must think we were going to make him drink the urine. That's what you do with something in a cup, after all. So I eventually did what I should have done in the beginning: let him go potty "just in the toilet", hid the cup behind my back, waited until he started peeing, and then reached behind him and caught some.
The urine did show sign of an infection, so we have been on an antibiotic since last night. I had hoped he would feel better quickly and could go on his field trip to the fire station today, but it was not to be.
The worrying just never stops. It ebbs enough that I kind of forget what it feels like to jump up at night when I hear him cough, or check on him obsessively even when he's not coughing. But then we have a week when the worrying is back in full force and it really knocks me on my butt.
