food explorers

I'm beginning a 2-week "staycation" while the boys' caregiver is on her vacation. There's a lot I hope to do in these 2 weeks, including activity and non-activity with my kids. I also hope to get back to blogging (a common refrain among bloggers, it seems.)

I have a lot of BIG IDEAS floating around in my head that I want to unload, but today I think I'll start with something more manageable: a report on Henry's "food explorers" class.

Any of you with children with major feeding issues will already know all of this, and more. But for families like ours, with smaller (but still frustrating) food issues, maybe this will be helpful.

Henry eats a (comparatively) wide variety of foods, but is very resistant to trying anything new, and has an extreme reaction (gagging) when forced to try most new things and particularly vegetables. He also prefers to eat with his fingers and pick food apart, peel it, squash it, etc.

The food explorers meet twice a week. The kids are presented with a variety of foods to discuss that day. The foods are passed around the table and each child must serve him/herself. Thus they are forced to at least interact enough with the food to touch it and place it on their plates. For some children this is quite a feat in itself. I should note that the foods aren't anything exotic. Past sessions have included string cheese (just touching it to pull it out of the bag made Henry gag), turkey slices, orange bell pepper strips, vanilla yogurt, graham cracker sticks...

They discuss the properties of the foods, and last week they made a craft using the foods. The literature the therapists have been sending home each week really encourages children to play with their food, which would not have been my instinct.

There is some kind of reward system for interacting with the food. But no one is forced to eat anything. Overall it has been a positive experience for Henry, maybe because he is willing to try many of the foods- he gets a lot of positive feedback. But the idea is to focus on the positive, of course, no matter the level of interaction.

Let me give you an example of how this has translated into our home life: last night we served Henry hot dogs from the grill, blueberries, and barbeque potato chips. Seemingly three of his favorites. But the chips were a different brand, and were ridged. Totally and completely different from the barbeque chips that Henry likes. I was in the unusual parental position of asking Henry to eat one of his potato chips before he could have more blueberries.

"I'll sniff it" he offered.

"Um, OK" I agreed. Then I negotiated, "how about trying a lick of it?"

So he sportingly picked up the chip and licked it. I hoped that the taste might encourage him to actually eat the rest. It didn't, but I let the subject drop.

It will seem a little goofy to anyone else dining with us, but this system feels right to me. I hate only feeding Henry his favorite foods. But I hate forcing him to gag down a bite of broccoli even more. I like the idea of having him serve himself an un-preferred food, keep it on his plate, and maybe sniff or even lick it. It seems like a compromise we can live with and maybe it will condition him to eventually try something new.

end of school

I'm at home with "sick" (but not really sick) Tommy today, and thought I'd try to catch the blog up on the past month or so.

Although Henry is still in school this week- making up some calamity days- his class had their end-of-the-year events last week. Thursday they had an "awards ceremony" and then early dismissal. The awards ceremony was cute- each child came to the front of the class to receive some kind of candy and a certificate. The awards were not academic, but based on the child's personality. For example, one boy was given a box of Whoppers and his award was for the "best storyteller". I can only assume that he tells some tall and lengthy tales, as some ASD kids tend to do.

After the award was given, classmates were encouraged to say something nice about their friend. I was so moved- even the children that I've observed to be very non-communicative stood up in front of the class and called on classmates by name. Those kids are troopers- every one of them! The same couple girls were always the ones to say something- and it usually was a take-off on what the teachers had said: in this example "you always tell really good stories".

Henry didn't want to say much about his classmates, and when I did prompt him to, you could tell that he was scripting. For example, one boy is on Henry's baseball team. I whispered in his ear that he could say something about that. Henry raised his hand and, when called on, stood up and said "you were once on my baseball team. The Florida Marlins." in an announcer-type voice. He didn't get that he was supposed to say something nice, like "you always do a good job".

When school started in the fall , Henry was quite fixated on Prince Caspian. That's what he was for Halloween, and I think the teachers didn't realize it was just one in a string of movie obsessions. So all year they have all talked a lot about Prince Caspian, even though Henry doesn't show much interest at home anymore.

Henry's award was for "best hugger" and he was given a bag of Hershey's hugs. "I don't want this award" he proclaimed. "I want the Prince Caspian award". I was a little embarassed, but the teacher didn't miss a beat. She picked up a pen and wrote /Prince Caspian Award on the certificate. With any other, typical, child, I would think this was giving in/reinforcing bratty behavior. But as we parents (and teachers) of special ed kids know, we have to pick our battles.

After we left school that day, I re-learned a lesson. I thought I would suprise Henry with a trip to the zoo- just me and him. I didn't bring it up at home because I didn't want Tommy to hear and be jealous. Well, of course my little predictable-structure-loving man didn't like my idea. He wanted nothing to do with the zoo (even though he'd been asking to go for weeks). He wanted to go to the library. Of course. I persevered and drove out to the zoo, only to find that I didn't have my membership card. (Doh!) So what ended up happening? That's right, Henry got his way and we went to the library. At least we stopped at a park for a picnic lunch first.

Another lesson re-learned this week: make Henry do things, even when he protests. We joined the community center pool this weekend. Bill and Tommy went ahead to swim and I started laying the groundwork with Henry. He was watching the same scene over and over from Sleeping Beauty- the big finale when the Prince is let out of the dungeon and fights the dragon. re-playing it over and over. I could have just let him keep doing that while I cleaned the house or read a book.

I mentioned getting ready for the pool. He said he didn't want to go, but then turned the dvd off after one more playing of the scene. He sat on the couch, repeating that he didn't want to go. I threw his swim trunks and shirt down the stairs and by the time I got down there he had put them on. His words say "no" but his actions say "yes".

Would you believe that once he got in the pool (he was timid at first) he didn't want to get out for HOURS? I actually heard him saying "watch this mom" "watch this mom" over and over. It was awesome! But also humbling. How many days do I let him sit and perseverate on something, all by himself, rather than pushing him to do something interactive with us? I must remember not to get lazy.

One other development that I want to mention- Henry's speech and occupational therapists are starting a group called "Food Explorers" for kids with food issues. The idea is not necessarily to get them to eat anything new yet, but just get accustomed to touching the food, talking about it, in sort of a scientific way- talking about the properties of different foods, etc. The group will meet a couple times a week during the 5 or 6 weeks of summer school. I will let you know if anything exciting comes of it.

Halloween 2008

It's been quite a busy week around here. Some neighborhoods in our area (including ours) had trick-or-treat night on Thursday, the 30th, while others went ahead and had in on the (more logical?) day: Friday. The boys had parties at school, and were also invited to a couple birthday parties this weekend!
So it was a full week of carving pumpkins, shopping for presents, getting in and out of costumes, and gathering SO MUCH CANDY. Too much candy, that my children have already forgotten is here and I, unfortunately, have not forgotten, but keep eating it...
The first video was taken before we left to trick-or-treat. Henry is describing his costume (it has a waistband!)- sorry I idiotically turned the camera sideways to try to capture the whole look. You'll also see Spiderman dart back and forth.
The second little clip I wanted to tell you about: last year there was a house that was scaring everyone. Even the little kids, which ticked me off. This year we came up the opposite side of the street, and I saw that they were again dropping something down from the roof of the porch when the kid approached, and screaming. So I started warning the kids: "that's the house that scared you last time."
If they had asked to just skip that house, that would have been fine. But, you know, God forbid you walk past one house that's giving out candy. Henry was determined to trick-or-treat there. So, first I loudly announced "this is the house that scared you last year", hoping that the teenagers on the porch would get the hint. Then I suggested that Henry get out his sword and use it to defend himself against the scary house. Of course, my very noble knight had trouble unsheathing his sword without some assistance. But once I helped him get the sword out, he waved it valiantly, and proceeded up to the house.
I was so happy because the kids on the porch played right along! "Oh no! Don't come any closer! Here- just take your candy and go!!!" they shouted, and threw 2 pieces of candy out onto the sidewalk. Of course we made a big deal out of how Henry scared the scarers. And that's what he's telling you in that little video.
Kate was giving out candy at her grandma's house (her mom's mom-she lives near us), so Bill took the boys over there to trick-or-treat and see their sister.
Friday night Henry had a birthday party to attend, so I took Tommy trick-or-treating in his babysitter's neighborhood. A very cool older kid (L's nephew- 2nd grader) went with us, and ended up inviting Tommy to SPEND THE NIGHT. After I nearly passed out at the thought, we decided to give it a try. Tommy has been away from home many times- but always at Grandma & Grandpa's. We tried it once before with a friend and it didn't go so well- I ended up having to go pick him up.
I slept with my cell phone next to my pillow all night, but of course everything went fine. We were all meeting at a indoor play place the next day for a birthday party, so it really worked out very well.
Henry did well at the party Friday night, as well as the party yesterday afternoon. Although he really wanted to dance around out in the video game area, watching and playing games, he agreed to wait in the party room until the appropriate time. This was huge- I didn't have to ignore the whole party and stand out in the game room with Henry for an hour. Huge. He attempted lots of games with good spirits, and I was just really proud of him. Both my sweet boys are growing up into such nice kids.

an autumn outing

Yikes! I don't want to leave that rant up here too long! And, we did something fun and photo-worthy yesterday...

Remember our 10th anniversary trip? Bill suggested that we take the boys down to that area for the day, hike around and have a picnic. We decided to stop at the first area of the park that we came to. Unfortunately, we didn't remember that this area was the most treacherous. I literally remember thinking when we were here before "I would never bring my kids here- I would be terrified." Ooops.

Tommy was so very excited, and just hopping and jumping around like he does, right near these slippery drop-offs. And we worried about Henry just as much, for almost the opposite reason: he is so weak and uncoordinated that he might just stumble and fall down and panic...

So we just held on really tightly. And of course everything turned out fine.

I ended up being the only one who slipped at all. On one of these broken steps. I was holding Henry's hand at the time, and made a big deal about how he "saved" me.

Henry pulled the same routine he had at the pumpkin patch: I'm not going to look at the cliffs. I'm not going to hike on the trails. I just want to wait in the car... But it was easier since Bill was there with me- one adult to talk Henry down and the other to be excited with Tommy. Henry ended up enjoying himself, as always. He specifically asked me to take this picture:

There was lots and lots of step-climbing, and we were so proud of Henry for the way he kept up. I had visions of carrying him up and down steps when he was 5 years old and just didn't have the strength, or his little legs were too short. But he's a big boy now and didn't complain once. He even enjoyed balancing on some of the stone walls: "It's like a balance beam!"

Stamina is never a concern with Thomas, and yesterday was no exception. He could have stayed twice as long, climbing and jumping and making up adventures. In the picture below he is holding a piece of rock that he found and had declared to be "a dinosaur's tooth!" (This picture is kind of dark because we were under a huge rock overhang- I don't know if that's technically considered a cave, but that's what we called it.)

This picture was taken from inside one of the cave areas. Can you blame the old man who made this his home? If you take out all those people wandering around, what a gorgeous retreat.

"it's like a party here"

I wanted to write about a few fun/good things that have happened this week. And because I can't figure out how to move these videos to a different spot, I guess I will tell my stories in reverse order.
Last night we went to a professional soccer game- our first. Bill had purchased this package through Easter Seals that included 4 tickets to a baseball game (our city's minor league team), 4 tickets to a soccer game, and some kind of tickets for Magic Mountain. We never used the baseball tickets, and I doubt we'll use the Magic Mountain tickets. But I'm so glad we used these soccer tickets! The night was a resounding success!!
Henry watched the entire game with excitement. He seemed to really follow what was happening, cheering and shouting at the right times. Well, he made a lot of noise the whole time, to be honest. That's what I was trying to capture in the above videos- the way he was hopping around and making sound effects for each kick and header. It so happens, though, that both times I started recording, someone fell down (our opponents were the NY Red Bulls), he turned to announce this to me, thought I was taking his picture, and posed. I still posted both videos- I think they're cute (but I'm a bit biased).
I was just floored that the game held his interest like that. You can see that he brought some books with him, and held on to them the whole time, but he never once looked at them. It's been a couple years since Kate played sports, so maybe he has just matured, but we would always need to entertain and/or feed him at her games. I can't be sure if it's something about soccer, or the stars were just aligned properly last night.
Of course Thomas enjoyed himself. He got to meet the mascot, got a free little soccer ball that they threw into the stands, and daddy took him all the way to the top of the stadium when he started getting antsy.
I probably had the least fun of all of us- only because I was freezing my behind off. As soon as the sun went down and the breeze picked up, I was cold. My teeth were chattering as we walked to the car! But no one else was cold. That tells you how much fun they were having! If I hadn't hustled us out of there, we probably could have stayed to get players' autographs and stuff. We'll have to go another time!
The other story I wanted to tell is from last Saturday (the day before the storm). I was having Henry work on his "all about me" poster for school, and of course Thomas wanted to create his own "all about me" poster. (Note to self- always prepare for 2.)
I put on a group of Paul Simon cCDs, set to shuffle, and we worked for awhile. Then Henry moved on to a puzzle, while Tommy continued working carefully on his poster.
At one point I came in to the room, heard The Obvious Child, and started dancing around a little. (I defy you to hear that song and NOT dance.)
Tommy looked around and said "it's like a party here right now."
He elaborated: "One kid drinking water, one big kid doing a puzzle, and a mom dancing. That's a party."
Then he added: "And my new friend is my brother."
A party indeed. Does it get any better?

the circle of life

Could I be any more cliche than this? Henry watched The Lion King a couple times this weekend and took 2 different Lion King books with him to his first day at the new school, so I just can't avoid using the circle of life phrase.

Henry has been feeling a lot of anxiety about this change to a different school. But the good news is that he's been expressing that verbally without too much other acting out. This morning he told me he didn't feel too well. And that he was nervous about going to a new school.

Of course I understand how he feels. How nervous do any of us feel when we start something new? He's not quite 9 years old and loves his routine- gulp. I can't let myself get too far inside his head or I'll be trying to smuggle him in to work with me and "office-school" him to never let him out of my sight!

So I tried very hard to remember that a mom's job is to say "I understand how you feel. It's normal to be worried about something new. But you'll be fine. Everything will be great. I think you'll love your new school!"

I remembered that a new infant was starting today at L's house, and I thought about how his parents must feel- leaving their baby for the first time.

I told Henry to think about how scared that baby might feel, but that we knew he would have so much fun at L's house and soon he would love it there.

There was a little mix-up with the bus, so we had some extra time to snap photos while waiting. It finally arrived, although it stopped about half a block from where I had been told...

Henry sat down across from a chatty 5th-grade girl. She introduced herself and asked us our names. Henry pointed to her Camp Rock binder and said "Camp Rock".
"I have a Camp Rock binder, Camp Rock notebook, Camp Rock folders, and Camp Rock pencils", she replied.
"Wow" I said.
"I'm a big fan" she explained. Then she offered to help Henry find his classroom.
This feels as hard as every other first.

"I did good"

I had to leave work Monday because I was crying. Not just a few tears in my eyes- that happens just about every damn day around here. It was the kind of crying that doesn't seem like it's going to stop anytime soon. So I just ducked out the back door and went home to cry some more and then wash my face.
I don't really want to get into why I was crying- it was just one phone conversation too many about a stressful topic that has been the subject of countless conversations over the past few months.
When I got back to work, my friend said that she had been feeling like her emotions were really "close to the surface" lately. Another work friend told me he had been feeling very emotional over the weekend. So maybe there is something in the air at this time of year. I dunno.
It is the season of weddings (we have 2 in June) and graduations (we hopefully have 2 in June) and thus of new beginnings. I need to get a handle on this emotion thing or I will be bawling my way through the next 6 weeks.
I would like to share something really special that we experienced this weekend, and hopefully somebody out there is still reading.

Saturday Henry had his first Miracle League baseball game. I'm just about the last person you'd catch being all sentimental about a sporting event. But this program is one of the coolest things we've been involved in.

The league is for kids with all sorts of disabilities. Each child is matched up with a "buddy" who helps them play (to whatever degree he or she needs help). Every kid gets a hit and every hit gets on base. Every kid scores a run every time. The final score was 24-24, and something tells me it will be the same next week.

Each player has a nickname, and the announcer plays it up like a real ball game:

Up next for the Marlins is number 1, Hammerin' Henry. Henry hit a single his last time at bat, and has been working on some weight training in the off-season.

If you've been reading here about Henry for any length of time, you know that he's not much into physical activity or, well, anything done outside.

But this was different. Henry fielded just about every ball, with gusto. That's not to say that he actually caught any of them. But he ran and ran and didn't give up. (The kids in the light blue shirts are the buddies. Henry's is the girl in the pink cardigan.)

He was so proud of his two home runs. On the ride home he seemed very dazed- that was a lot of activity and a lot of new stuff to process. But he kept repeating "I did good!"

Also, we had "transitions" lenses put into Henry's glasses, so they turn to sunglasses outside. The sun has always seemed to really bother him, so maybe they are a contributing factor to his enjoyment of baseball. Plus, they make him look really cool.
Another cool aspect of the Miracle League for parents is that we just sit in the stands and watch and cheer. Just like regular proud parents. We chatted with the other grownups around us; parents of both players and buddies.



As a side note, but another contributing factor to my "emotions close to the surface", as we pulled in to the park where these games are held, I realized that I had been there before.
Henry had attended 2 birthday parties here when he was 3 or 4 (pre-diagnosis). Both for kids who were cared for by L also. Both parties went relatively badly- but one stands out in particular. I remember having to carry Henry screaming to the car halfway through the party. He wouldn't leave the gifts alone and of course could not be persuaded that they didn't belong to him.
I remember feeling so frustrated and alone and so sad for Henry because he was missing out on special peer activities.
5 years later, we've both come a long way. My expectations have undoubtedly changed. And Henry's abilities and understanding have brought him far. He listened and followed directions and tried something new that day with bravery and enthusiasm. Yes, the situation had modified rules and expectations. Yes, it was different from the league that other 2nd graders will play in. But it was a success. He did good.

a little heavy on pictures of the youngest

You're lucky I didn't write this last night. I finally broke down and bought Claritin D- the kind you have to buy from the pharmacist and practically get finger-printed for. I feel like such a criminal when I buy it that I avoid it as long as I can.

But Friday night I really couldn't breathe and so I bought the drugs on Saturday. Saturday night was fine, but last night? I was on some kind of decongestant trip. I tossed and turned and couldn't sleep and my mind started racing about the dumbest stuff: Henry's puzzles are still out in the basement. I should have had him help put them away. I have that chore chart that we never use. I really need to start using that with the boys. I shouldn't have bought that DVD for Henry without showing that he earned it somehow. There's a basket of laundry downstairs that I didn't fold yet...

People actually abuse these drugs because they WANT to feel this way? No thanks.

So.

Thomas had his first-ever soccer practice Saturday.

He did his usual shy thing, but I'm sure he will warm up to it. This league for 4-year-olds doesn't have games or anything, just practices. Luckily we have a very dear 10-year-old friend who plays many sports and gives us lots of hand-me-downs. So we are set for shoes and shin guards. But I have been informed (by my husband) that these shorts he's wearing are not appropriate, so they will have to make a trip to the sports supply store. (Roll eyes.)

Later on Saturday we went to the library and then to the grocery store. I did buy Henry the 101 Dalmations DVD and I did struggle with that decision.

When his teacher started reporting on Henry's day using 0-5 stars, the idea was that we would track how many stars he earned, and tie that in to a reward. Needless to say, the system hasn't really worked. He'll have an excellent couple weeks of 4 & 5 star days, but we won't happen to go to the store that weekend.

Then he'll have a couple rough weeks of 1 & 2 star days (even 0 stars one day this month), and I'll turn around and buy him a DVD. Maybe it's just me being a mushy marshmallow-spine mommy, but I find it hard to say no sometimes. Henry is a smart kid. But I'm not sure that he truly understands a consequence that is not immediate. I look in his eyes as I say "I know you want that DVD, but you can't have it because you kicked your teacher on Tuesday" and I don't see understanding there. All I see staring back at me is the blind desire for this DVD. And, if I'm being honest, I see the threat of a full-blown freak out if we don't bring the DVD home.

I am considering making it more of a daily consequence- you can't watch a movie after school if you haven't had a good day. But then I think about how hard he works at school all day and how chilling out with a movie probably feels so good to him, and I lose my resolve.

And sometimes I feel like all this talk about how many stars he earns just stresses him out. He starts to cry and shout "on Monday, I won't earn any stars! I will not be good!"
So, I'm a pushover. My secret is out.

Tommy's child-care provider has been doing more fun stuff with the kids. A couple weeks ago they planted zinnia seeds:

So this weekend Bill and Tommy moved them to roomier pots:

That squirt bottle he's using? It has provided HOURS of outdoor fun. Who knew that squirting water at stuff was so entertaining?

Both boys rode their bikes some more this weekend. I told Henry, more than once, that we were just going on a bike ride. I did not bring my money and we were not going to stop at Starbucks. But he did not believe me. This resulted in a few angry moments and about a quarter mile of him pushing his bike, rather than riding it. (I guess this was some sort of protest, but it really only punished him!) So, see, I don't always give in!

Tommy had a small wipe out, which led to the overuse of these cool band-aids:

Springtime feels really good. Having our whole family back home again feels really good. If we could just figure out the new VCR so we could record The Office, all would be right.

manic and love to the homeschoolers

When will I learn that drinking a larger size coffee doesn't make my brain work better? It only makes it work faster and more maniac-ly (not taking the time to figure out if that's a real word or not. See what I mean?)

Some things I'm thinking about this week:

-Should I investigate the autism school in our area? The one that we looked into back when Henry was 4 and didn't have a diagnosis yet. He's doing pretty well in our public school so far, but his success seems completely hinged on Mrs. C pulling the right tricks. On days she is out sick or because her children have a snowday (as has happened A LOT in the past month), half of his progress flies out the window and has to be re-built. How great would it be if the whole school were full of teachers who get it?

Henry has been having more 3-star days than 5-star for the past few weeks. Nearly every day he says he "feels sick" and should stay home from school. When I try to press him further on what feels sick, he (as has been the case for his whole life) cannot tell me. So I have been ignoring it.

His eating has become even more particular- he won't eat pasta and sauce anymore and I have resorted to trying different sauces and different shapes of pasta (he always asks for "the seashell kind".)

It seems like something is up. His teacher has not been sending homework home regularly either for the past few weeks, making it hard for us to keep a routine at home. Perhaps she is just very busy right now with IEPs, etc. But, again, I'd love it if my son could be in an environment where everything does not rely on ONE teacher.

-Henry has been asking to "sleep longer in your bed", meaning he wants to fall asleep in our bed and stay there. He never ever did this as a younger child, it is relatively new, and again makes me wonder what is up.

-What will Henry do this summer? Let's search the internet... Here's a super-cool looking program right near our house, but it costs twice as much a week as the Easter Seals program he's attended in the past. I wonder if there is funding out there that Henry could qualify for? Where would I look? Who would I ask? I'll add it to my to-do list.

It seems like my to-do list is always growing. I know that's true with everyone.

I'm not sure what's bringing on this frenzy. Could be the closing of the jury duty chapter in my life. Could be the impending IEP meeting. Could be the house-cleaning I attempted this weekend. Could be the feeling that winter will be ending soon and spring is coming. Could be the realization that my high school senior (pictured above enjoying the snow) is getting ready to graduate soon.

Operation Forced Independence was fairly successful this weekend. I seem to be the only one for whom this is a big deal. I hadn't even told Bill of my Big Plan, but when Henry asked for sausage for dinner Friday night, I proclaimed "you can learn to make it yourself!" Bill didn't miss a beat, but walked Henry through how to open up the package and put the sausage links in the microwave. Kinda makes me think Bill's been trying to do this for awhile.

Saturday Henry made himself some sausage again (the kid will eat pork sausage links for every meal) and some waffles in the toaster. He didn't eat the waffles, though. (I feel that way sometimes, that a meal just isn't as good if I have to make it myself.) He also spooned out some mixed fruit for himself (pictured above).

Sunday he asked for waffles and I told him to come in the kitchen and we'd make them together. At that he changed his mind and said he wanted cereal with milk. I made him help with that also, but I guess it's a little less involved. And he can still see the tv while pouring cereal and milk.

I have had him get out his own pajamas and put them on by himself every night, and attempted to show him how to run his own bath Sunday night. I made a better effort to have him clean up one thing before getting out another. This is a never-ending battle with a kid who likes to have 3 puzzles out at once and all the prints and books related to a certain move spread out around him at any given time.

He didn't really protest too much at any of this, and I think this will need to be a new state of mind for all of us.

One note I do need to make to Kyra and all you other brave homeschoolers: I don't think my son would respond to this direction as easily if his teachers hadn't already "broken him in" for me. He has learned a lot of "if/then" instruction from school, and a lot of "you can do it by yourself".

Heck, I would still be helping him go to the bathroom if he hadn't gone off to kindergarten and I realized that his teacher probably doesn't pull down his pants for him and put him on the toilet! I'm not kidding, that was a huge realization for me.

I am a big big believer in getting help and advice from as many good sources as I can (this blog being just one example of that.) I have learned so much from friends, family, teachers and childcare providers who have shared their wisdom and philosophies with me.

Given all this reliance on others to help me, I am simply awestruck by homeschooling moms. Of course I hope that you have a good support network of other adults and professionals just as I do. But your day-to-day contact with them has to be minimal when you're down in the trenches teaching an oppositional child how to read or write or add.

hop on board the roller coaster

Oh, it's just all up and down over here. I don't know which end is up from one minute to another.
First of all, I want to thank all of you who left comments on my couple previous posts. I am really bad about responding to comments, and I apologize. But I do so appreciate everyone's input. Keep it coming!

Today I wanted to share something exciting. Henry appeared in his first school performance! His teacher just told me the night before, in the communication notebook, that he would be singing a song with the second-graders on stage. At first I was just going to ask her to take a picture for me, but then I wondered "what am I thinking? My son has never before performed on a stage. I can't miss this." So I called in to work and said I'd be late, took Tommy to preschool, picked Bill up from work, and we went to watch the "Charity Newsies Assembly" at the elementary school.

Henry sat in the audience next to his aide and watched the first graders perform. Then he filed onstage with the second graders, seemingly unfazed by all the commotion. He went promptly to his designated spot: (The photos I took are ridiculously dark, but he's basically in the center of this one, wearing a dark green sweater with a white snowflake-pattern stripe across the chest)

I saw him looking around, and that mom instinct in me took hold and I started waving like an idiot. I hadn't told him I was coming, and neither had his teachers. I could, and should, have stayed out of sight, but my excitement and pride just possessed me.

He saw me and got really excited, and started calling for me to come over, and to come up on the stage. I was worried that I had screwed everything up by letting him know we were there!

But he ended up participating just fine. He was over at the edge of the group instead of right in the middle where he was supposed to be, but no one cared.

They sang America the Beautiful, with accompanying hand motions. Henry had learned the whole thing and did it right along with the rest of the group. (Normally this is definitely the kind of thing that would make me cry, but I was too excited to cry this time.) Then they recited a little poem about birds on Farmer Brown's farm. The kids were divided into 3 groups and each was supposed to be a different bird. Henry's group were Turkeys, who shouted "eat more chicken, eat more chicken, gobble gobble gobble, it's finger lickin'!"

Henry seemed excited and proud, and aside from some hopping up and down and covering his ears, he did everything just as he was supposed to, as far as I could tell.

When the second-graders were finished, they came back to their seats and Henry asked daddy and I to sit with him. Again, I was worried that this would mess everything up. I sat with him for a minute and then Bill did. (At this point the regular-ed second-grade teacher came over and introduced herself to me. She seemed very nice, and resembled Susan Senator, I thought. A good sign!)

I'm not sure what Bill said to Henry, but when he got up to leave, Henry didn't argue. Just waved and said "bye mommy, bye daddy."_______

So there are some good things at school- some very good stuff going on. Despite my rant the other day, I know that his teacher is just trying to work on the thing that is the biggest obstacle right now- the aggression. She replied to my e-mail and said that she knows the medication decision is a very hard one, but she feels that Henry is not able to control his actions at some times. He will continue to be observed by various people, but that's tricky because his behavior is so erratic. I believe that is the reason for the increased info in the communication book- to show us that the behavior is very random.

Drama Mama had a lovely post the other day about remembering how great our kids are. Obviously, it hit home to me with some of the negative things we've been hearing about Henry lately, and made me think about something that happened last weekend:

The boys had a make-up gymnastics class Saturday morning at 9. Because it was a make-up, it was different: different kids, different teachers, different routine, mom and dad both there, Tommy there... So Henry was a bit dysregulated. Kept loudly saying that he didn't want to go. Needed a little urging to participate, but ended up doing fine in the end.

After gymnastics, we decided to go to a nearby greasy spoon for breakfast. The place is small and was crowded (one of those places that was built like in the 50s and people were smaller then- I felt like a family of giants walking in there). Henry had brought in some of his papers and was talking loudly about them. The only seat was at the bar. Initially the boys sat between us, but then started messing with each other, so Henry and I switched places. Then a booth opened up and we moved over there.

Henry ordered (for himself) blueberry pancakes, sausage and bacon and orange juice. He proceeded to eat it all with his fingers. An old man walked past our table, to pay his bill. He stopped in front of us, smiled, and said "that's 2 good looking kids you've got there."

I smiled, said thank you, and then my eyes filled with tears. I didn't even realize, until that comment, all the baggage I was carrying around. How much I was worrying about whether Henry was bothering people, or what people might be thinking about an 8-year-old eating with his fingers. It's like a rucksack that I've been carrying for so long, I don't even notice it anymore.

With his one kind comment, that man made me realize that not everyone is judging me or my family. That not only do I think my kids are great, lots of other people do too.

Happy thanksgiving my friends and family, and thanks for reading. I'm more thankful for all of you every year!

first day of preschool and I'm not gonna cry

Once the kids she cares for are 3, if their parents are interested, Thomas' sitter takes them to the neighborhood preschool. So the younger kids are used to riding along to drop off/pick up the older kids, and are really psyched for preschool by the time they are old enough to go. 3-year-olds go for 2 hours in the morning, 3 days a week. When you're 4 you go 4 days a week.

I didn't figure this would be a huge transition for any of us, considering that Tommy is familiar with the place, he is already used to being away from his parents during the day, and I wouldn't have to be dropping him off and be tortured if he happened to cry. But I do feel a bit strange to be missing out on this- like I'm missing his first smile, first steps, or first black eye (oh wait, I did miss that.)

We attended an "orientation" earlier this week- basically a way for the kids to get familiar with their classroom and for parents to ask a bunch of dumb questions that had already been answered in the letters the school has sent home. (Aren't I such a snob? And I wonder why I don't have more friends.) Tommy worried about what kind of toys they would have in his classroom, and my grasping-at-straws response of "blocks" did not put his mind at ease. (I was informed that "blocks are not toys.")

So I breathed a sigh of relief when he discovered a Batmobile in one of the toy bins! School would be ok after all.

That day I brought my camera, but the batteries were dead. (Why does that always happen?!) So this morning we stopped to snap a couple pictures before I dropped him off at L's house. Tommy does not seem to be worried about school, except to say that "I might be shy." I have tried to reassure him that it's perfectly fine to be shy in a new situation. And when you select as stylish an outfit as my boy did for the first day, you won't be lonely for long!

This morning I had to fill out this long questionnaire, answering questions about my child's fears, likes, dislikes, allergies, and other noteworthy info about his quirks. It took me no time at all. Most moms probably feel this way with their second child, but especially because of all his older brother's special needs, transitions like this with Tommy seem to be so much more manageable and less emotional.

And yes, we do own a hairbrush. Just didn't use it today. If I know L, she got him cleaned up before school. It takes a village, as they say...

riding lessons

Several people have asked for more information about our horseback riding. We had our first real lesson last night. But first, let me tell you how we got here.

I know nothing about horses. I think I rode one once, at camp in 6th grade. But my dad grew up on a dairy farm, and I have a sentimental spot for farm life and farm animals. Henry shares that interest- either he was born with it or I created it in him- and we enjoy going to the state fair together and visiting that dairy farm that we last went to on Mother's Day.
Last year at the fair, Henry showed a lot of interest in the horses. I had read about some other kids taking therapeutic riding lessons and thought "well, I'll look into that." I don't know about the rest of you, but lots of times "looking into" something is easier said than done. Grandma and Grandpa had offered to pay for Henry's lessons as a birthday gift last August, and we are just now starting them!

Kate has a friend who rides horses, and we know a woman at church who rides also. I asked both of them if they knew of anyone who did therapeutic riding, and waited and waited for their answers. I searched online and found quite a few promising stables, but they were all an hour or more away from us, and I was sure there must be something closer.

Finally, 6 months later, Kate's friend came through with the name of a woman who boards horses at her same stable. I called Pam, and grew so excited as I talked with her. She is a psychologist who works at the state Department of Mental Health as well as being a Certified Riding Instructor and "Certified Equine-Assisted Psychotherapist" and 4-H adviser.

I'm sure that the cost would vary, according to where you live, but Pam charges $30/1-hour private lesson, $20/half-hour private lesson. And she is letting us pay-as-we-go, rather than making us commit to 10 lessons up-front or something. (Although if things continue to go this well, I think we'll be doing this year-round, along with the swimming lessons.)

Last night she had Henry help her get T out of his stall and groom him, all the while telling Henry the names of all the equipment she was using.

Then they walked T outside, and she asked Henry to pull the gate shut. (Dumb mommy lesson #1- Henry should wear jeans and sneakers next time. Not shorts and CROCS.)

Note Henry's posture in the below photo. This is one of the things they will work on. Pam reminded him several times to sit up straight, and it was almost as if he wasn't sure what that meant. He will gain strength and muscle tone, just by riding and holding the reins with proper posture.

I was asked to help walk the horse (so I am learning too), while Pam walked alongside Henry. He remembered to say "walk on" when he wanted the horse to go, and "whoa" when he wanted to stop. Pam kept quizzing him on the parts of the saddle, etc. and reminding him to sit up straight and proud. That was one thing that struck me last time, when we watched the girls having a lesson: how proud, poised, and confident (but not arrogant) they seemed.

And I was really struck by the fact that horseback riding is not only about learning a skill- it is also about the relationship with the horse- the respect between horse and rider. I mean, T could have effortlessly tossed my kid 40 feet over a fence if he wanted, but instead he swished his tail so patiently and walked so well with me, even though I'm sure he could tell I didn't know what the hell I was doing.

Just like last time, Henry's internal alarm suddenly went off, and he was ready to be done. I hadn't really paid attention, but Pam said that he had ridden about 20 minutes, and she seemed genuinely pleased and proud of what he had done.

So, it took us almost a year to figure this out, but I think this picture speaks for itself- it was worth the wait!

walk on

This always happens. I wait too long to post about one subject, and then another is running up behind it, trying to crowd it out of the way. Sometimes I intend to write one post and put off the other for another day, but that never happens. It usually works better for me to just spout out about all of it, all at once.

So, the horseback riding. We are off to a spectacular start! Henry was so excited when we got to the farm (after mapquest sent us on a delaying detour) that he unbuckled his own seat belt and jumped out of his seat. I've never seen him do that before. He raced/danced around from one fenced area to the next, looking at all the horses.

Ms. Pam was conducting a class with three nine-year-old girls (not a therapeutic class, just a regular riding class). She had each girl introduce herself and her horse to Henry. Then Pam found Henry a helmet, helped him up onto the horse, and led him around the yard. Actually, one of the young girls (named Katie) led the horse, and Pam walked alongside, with her hand on Henry's back. My *&@% camera batteries were dead, but I was at least able to snap a few with my phone.

The horse's name was "T", and Pam told Henry to say "walk on T" to make T go. Henry shouted it with gusto! Then they practiced saying "whoa". After a few times, Katie said, "Ms. Pam, I'm not even making T stop!" The horse was really responding to Henry.

He was only on the horse for maybe 10 minutes, then Katie showed Henry all around the farm. She told him the names of all the other horses, and what kinds of horses they were. It was so cute to see these girls who obviously LOVE horses.

As Pam was gathering some information for me, and trying to schedule our first real lesson, Henry suddenly said "I'm ready to go home." We had been there about 1/2 an hour, and I think all the excitement was suddenly too much for him.

As I relayed this story to a friend, she pointed out that Henry telling me "I'm ready to go home" is a vast improvement over what his behavior might have been a few years ago: screaming, kicking, pinching. These all probably would have been directed at me, at Ms. Pam, even at his new little riding friends. As it was, he tried to hold it together until we could leave. I was just about proud enough to burst throughout this evening!

Unfortunately, we did need to make one more stop after that- the riding store was right down the street, and I wanted to get his helmet then so we would have it for the next lesson. The service was friendly, but slow (it's different out there in the country, I guess :-) and Henry was definitely ready to go home by then. He started saying things like "I don't want this helmet. I don't want to ride a horse. I don't like riding horses. This helmet is not the right size!"

I was so wishing that the salesperson would just ignore him, but instead she seemed quite concerned. "You don't like this helmet? Do you want a different color? Well, your mom just wants to keep you safe. Oh, you have to wear a helmet to be safe."

I was about ready to scream "my son has autism and he's overstimulated by the excitement of all this- just give me the helmet already and let us get out of here!"

It's been awhile since I've felt that way. I somewhat wanted to convey to this woman that my son was autistic, but felt a little awkward to say so right in front of Henry. How have some of you dealt with this kind of situation?
_______________

This week Henry is going to the sitter (L) with Tommy, and then next week the Easter Seals summer program starts. L and I were talking about the week's activities, and I decided I should take Henry to their neighborhood pool ahead of time, so he would know what to expect. It's actually a really nice pool with a huge shallow end and with steps leading into it. But I know Henry, and I know that he will resist doing anything new. (I mean, except riding a horse!)

So I took the boys to the pool on Friday. As I suspected, Henry started repeating "I will just watch. I will not get in the pool." He'll say something like that even as he's walking right toward the steps. But most adults (as I would want them to) will listen to his words and say "OK, you don't have to get in."

I took both boys' hands and walked right in to the pool. Henry started bobbing and splashing and grinning and said "It feels great. I love it!"

Just when I was feeling like champion mother of the month for figuring him out, I looked around. No one else was in the pool. No one. Then I noticed some kids around the edge of the pool giving us dirty looks.

It was adult swim. I had to tell both my sons to get out of the pool again.

Just when I think I'm one step ahead of a situation, I'm actually two steps behind.
________________

Kate has been working a TON at her new job. Yesterday she worked 11-4 and we decided to walk up to the restaurant for lunch. Henry and Tommy both complained, whined and argued the WHOLE WAY. It can be so discouraging and disappointing to try to have a normal Sunday afternoon family outing and have it nearly ruined by that kind of behavior. Obviously I can't blame it all on autism, because Tommy was doing just as much whining and arguing. But, he is 3. And he is easier to distract from his moods. But when Henry's in a "mood" too, they just egg one another on.

I tried asking Henry if he was anxious because we were going somewhere new. But that excuse doesn't really make sense to me because, while this restaurant was a new place to us, it is on the same street as the library and Starbucks- and you know those places are very familiar. Henry ended up losing his computer privileges for the rest of the day because of how he acted on our walk.

good news/bad news

Let's start off with the bad news, in order to end on a high note:

-Thomas has an ear infection. It's not causing him any discomfort, because the tubes are doing their job of draining the pus. It's yucky because it looks like snot is running out of his ear, and I need to figure out something to plug/cover his ears for swimming.

This morning he said "mommy, when I walk like this (marching), the drops in my ears make a funny sound." When he is able to communicate details like that to me, it makes me realize how little Henry is able to tell me. It is very difficult for Henry to identify anything that is going on with his body, much less translate that to an adult. Bittersweet.


Well, I guess that's all the bad. Now on to the good:

-Kate got a job for the summer- making subs at a new restaurant up the street. She seems really excited about it.

-We got a new (used) car! It's a 2004 Chrysler Pacifica in the red color. Our minivan and our Honda Civic were both over 10 years old and had over 100,000 miles. Driving this car makes me feel the way I felt when we first bought our house and had central air and a dishwasher: like I'm an imposter. Surely I can't be enough of a grownup to have a house with a dishwasher, or a car with a CD player and doors you can lock and unlock with your keychain!! (And don't forget grownup enough to make a car payment every month. Yuck.)

Tommy and I have been listening to the Beach Boys as we drive.

-I have finally found someone to do therapeutic horse-riding with Henry. I know I should wait until we try it to write about it, but I am so excited! I spoke to this woman last night, and then Henry and I had the following exchange:

me: "Henry, do you know who I was just talking to? A woman who is going to teach you how to ride a horse! She said we can come to her farm on Wednesday."

Henry: "She is?" (Eyes wide. He starts kind of dancing excitedly and looking around.) "Daddy, where are you?" (Then he stops and turns back to me) "What is her name?"

me: "Pam. Miss Pam."

Henry again: "Daddy, where are you?" (Bill calls to him from downstairs, but then Henry turns to me again) "On which day? On June sixth?"

me: "yes, on Wednesday- June sixth."

Once he finally had all the pertinent details, Henry danced on downstairs to tell Daddy. Henry kept saying "I can't believe it!" And it took him awhile to fall asleep last night.

I hope the experience lives up to the excitement.

try try again

Melissa, you are not the first wise woman to suggest that I buy my son a Spiderman shirt. The first to suggest it was L, the woman who cares for him all day. I guess she was getting tired of seeing him in his pajamas all day and/or having to do the dirty work of MAKING him change out of them. One morning she said "Tommy, you'll have to ask your mom to get you some superhero t-shirts."

Could I be any more dense?

That very day I went out at lunchtime and bought a Spiderman shirt and a Batman shirt, and they have been added into the rotation. Today I actually bought him 2 more. The jammies he was wearing Sunday are somewhat new (used to be Henry's), and he "wanted to show them to Grandma and Grandpa." I tried to talk him out of it, and then said "I'm just going to let him wear them."

"Of course you are" was my husband's response. What do you think that means?!
_______

Due to a schedule conflict Monday evening, I took Henry along to Tommy's gymnastics class. Over a year ago I had enrolled both boys in gymnastics: Henry in a "special needs" class and Thomas in a 2 & 3 year old class. Henry hated it and stopped going. Thomas loved it and continued.

I called ahead to ask Tommy's teacher if it would be alright if Henry came along. After the preliminary "he's not signed up for the class so he can't legally use the equipment" spiel, she said that she would work with him as she had time and let him try some things out.

Henry said he just wanted to watch, but also seemed excited to be there. (I didn't carry him screaming and crying from the place before class even started, like I did last year, so we were off to a good start.) The kids start off running in place, then do some stretches, and then a warmup song. Henry took a spot next to his brother and started running (stiffly) in place, clutching his prints and his newest Disney magazine. He continued to do some of the stretches and not others, but all with an interested attitude.

Tommy liked showing him how it was done, and Henry willingly tried jumping into the foam pit, doing a forward roll, the balance beam, donkey kicks, crawling through a tunnel, hopping, and jumping on the trampoline. I was so, so pleased! At the end of the class, the teacher said "Henry, last year, when you were in my class, lots of times you said 'I can't do it.' Today, you know what I heard you saying? 'I did it!'"

So I am considering signing him up for the class again, although I think the appeal of Monday's class was that participation was OPTIONAL. If I am paying for the class, I am going to want him to participate more of the time.

After gymnastics, we went to Bob Evans' for dinner. Maybe I was trying to re-write history, because it's the same restaurant we went to after that ill-fated first gymnastics class last year. It was during the first (also ill-fated) attempt at potty-training Thomas, and I remember a stinky and messy incident with a pullup...

Anyway, as soon as our waitress came to the table, Henry announced "I want blueberry pancakes and lemonade please!" No time to look at the menu, he was hungry! So we ordered right away. Tommy started looking around and coloring the kids' menu. Henry immediately began asking "Are they making our food? Is it done yet? Is she bringing my pancakes? Is our food ready?" He would not be distracted, and asked nonstop about his food. It reached the point where Tommy got exasperated and said "No, Henry. Our food is not ready yet. It is not coming yet. We have to be patient." (I guess someone was listening to me.)

Henry ate every last bite of his meal, and most of his brother's. He had also visited my office that afternoon, and visited L's house when we picked up Tommy. It had been a very busy evening. He had a pretty rough day the next day at school- I wonder if he was over-tired.

So here's to waiting awhile and trying something again. Henry may not be an Olympic gymnast anytime soon, but now I at least feel like he has had a positive experience there, and the three of us had a pretty pleasant evening together. Kind of an extended Mother's Day.

my little accomplishment

I have started jogging.

Two weeks ago I went for a walk after work. The track has quarter mile markings, and something possessed me to try jogging for 1/4 mile. It was so hard! (I later realized that I had chosen an uphill quarter mile- smart.) But the next day I walked with a little more jogging mixed in. The next day a little more. This week I have been walking to the track (maybe 1/4 mile from my office) after work, jogging around the track once, which equals 1.054 miles, and then walking back to my car.

I am able to do that in about 28 or 29 minutes, and then pick Tommy up from his sitter's all before 6 pm. The only drawback is that I don't really cool down much afterwards, so I show up at L's house all sweaty and tomato-red-faced. (I am one of those people whose faces turn bright red at the slightest exertion, and then stay red for an hour.)

I have jogged (please note that I don't use the word run) 12 out of the past 14 days. I go so slowly that all the other joggers pass me. Some of the runners pass me like 3 times during my one lap around the track.

I just feel good that I have finally figured out something that works for me. I have never been an athlete. But in high school, college, and pre-son married life, I did exercise pretty regularly. Henry's birth sent that out the window. I didn't have the time in the evenings to spare anymore. I think when he was 8 months old or so, I started getting up and walking at 5 am. That plan worked for a few years- I liked having the quiet time to myself in the mornings.

But the morning thing doesn't really work anymore. And I'm finally changing my preconception that "you have to exercise for 45 minutes or it doesn't count." So now I think I've found something that I can squeeze in a half hour- make myself sweat a lot, make my muscles work a little, and not take away from work or family or any of the other things I juggle.

I don't have lofty long-term aims of running marathons, or fitting into my pre-baby clothes. (Those would be nice side affects, don't get me wrong.) Right now I just have the day-to-day challenge of keeping up with this and trying to change the way I feel about myself- getting back a little control. Wish me luck.

I'm feeling nervous

The first day of Easter Seals "summer camp" went well yesterday. The drop off was a little rough. We arrived at the same time as a little girl who was very adamant about NOT wanting to go in. She was actually a pretty large and strong-seeming little girl, and her parents were struggling with her to get her inside. Of course both my boys were staring at her with the widest eyes. I noticed that her parents' van had an autism awareness magnet too.

When we got to the classroom, Henry spotted some puzzles up on a shelf. The teacher said "we got those just for you, Henry" and I think they really did.

This morning his teacher told me that yesterday was great, and they were all pleasantly surprised that Henry participated in circle time, etc. with no protest. I gave her some notes from Ms. H about motivators and certain techniques that work with Henry. Today is their class's swimming day, so that should be fun and should wear Henry out!

When we walked in this morning Henry kept saying that he didn't want to go in, etc. I hesitate to put words in his mouth for him, but at one point I said "do you feel nervous about starting something new?" And Henry said "yes. I'm feeling nervous." He kept repeating it while I talked with his teacher. I said "I know, Henry, I feel nervous when I start something new too. And I feel nervous when YOU start something new. But you'll have a fun day today."

While waiting for a prescription yesterday, I picked up the Chicken Little storybook for Henry. We already have 2 sticker books and a different story book, but you know that he likes to have the entire library for each movie. I felt a little sheepish, buying him a present for no reason, and thought I might keep it hidden until a special occasion. Well of course the special occasion came last night!

The past couple days he has been fixating on this part of the DVD Mulan: rent the DVD and go to the "special features" menu. This calming new-agey music plays while line drawings of Mushu and Cri-kee are drawn and then disappear and then are drawn again. Henry watches it over and over. I can actually see why he enjoys it- he likes to watch people draw anyway (a subject for another post). So he watched that for probably half an hour while the rest of us chatted and played with legos. When Henry took a potty break, Bill turned off the DVD. Henry was upset, so I told him that I had a surprise for him. He said "I want to guess what it is!" This surprised me, so I said "ok", and waited for him to guess...

Well he must have just heard that phrase before, because he got irritated when I prompted "what do you think it is?"

Anyway, he was so excited about the book, and many times during the night he said "thank you mommy for getting me this Chicken Little book from Kroger!" (He also asked a couple times which aisle I had gotten it from- I guess trying to picture the spot in the store?)

I just read this great essay that Alexander's Daddy posted. Go read it.