for my first child

1st day of school last fall

on the slip n slide with her brothers

Gretchen and Kate, summer 1995?

Dear Kate,

It seems like it's pretty hard for me to tell you how I feel. So I thought I would try this. (I wrote this back in December but never quite knew the right time to post it- your birthday seems as good a time as any.)

You were not the child who showed me what it's like to be pregnant, or to raise a baby. But, before those monstrous boys came along, you taught me how to be a mom. I remember when you first came to live with us, before first grade- I was scared of everything. I didn't know how to pack a lunch, I didn't know how to talk to other moms, I didn't know how to bring a dish for the girl scout picnic. Those things terrified me. I kind of thought that all the other moms had attended some kind of class, or were given a handbook when their kids were born, that told them how to do all that stuff, and I had missed out on it.

But I wasn't scared of you. I loved having you around. I loved brushing your hair at night and then reading you a book. I loved playing with your toys (whether or not you were there- haha). Even though we tease you about it, I think your dad and I even loved that you made us stay in the bathroom and talk to you while you were in the shower! I have so many sweet memories of shopping for Christmas crafts with you and then working on them every year, and of baking cookies together.

I have beautiful, beautiful memories of you and your dad singing together- Disney songs and Eagles songs. And of course I love remembering preparing for our wedding- going to dress fittings and having our nails done.

Those are all memories from when you were a little kid. Here are some things I feel right now--

10 great things about you (in no particular order):

1. You are smart and don't try to hide it
2. You like going to church
3. You help with your brothers without me even asking you to
4. You are passionate about basketball
5. Basketball is something that you and your dad are able to share
6. You have always liked to read
7. You are very open and honest with your dad and me
8. You sing along with me sometimes
9. You have faced, and continue to face, difficult situations with grace and maturity
10. You are true to yourself

We aren't biologically related. And the circumstances of that sometimes cause us some extra stress. But we love each other. And we are family.

Happy sweet 16.

Love, Gret

Kate and Bill at our wedding, May 31, 1997

finally photos

OK, this might be my favorite picture of Henry EVER. EVER. Do you understand? EVER.

Let me set the scene: you know that Henry's current favorite movie is Lady and the Tramp. The picture on the cover of the DVD is from the spaghetti eating scene. Henry talks about it a lot- we discuss all the items in the scene: the bread sticks, the tablecloth, the candle, Tony (the restaurant owner and accordion player).

So one Sunday (he's wearing his church clothes) I decided to make spaghetti and meatballs (sauce from a jar with meatballs already added- please, I'm NOT a cook.) I made bread sticks also, and threw a tablecloth and candle on the table. Voila- A Lady and the Tramp dinner!


I can't stop laughing at the way he's pointing at the spaghetti. And note that his DVD is right there next to the plate.

When I showed him these pictures last night, he grabbed this one, along with its double, and carried them all around for the rest of the night.

These next couple pictures are from the last trip to the zoo. (The time that he apologized to his brother.) Here they are watching the diver clean an aquarium. Henry was so fascinated by this.

At the petting zoo I pointed out these 2 goats and how they were "snuggling" together. Henry wanted to snuggle with them too:

More tomorrow...

Accessing Ability

I'm bouncing off squaregirl's post to give an example of something special that Henry's teachers do to access his abilities.

I've bragged already that Henry knows 25 words. He can read them and spell them. He can also add and subtract.

The thing is, Henry can't write. Not very well at all. He brings home papers every day where the teachers have written the letters H E N and he has traced over them. He is not even writing his entire first name.

I'm positive that there are teachers out there who would think that if a child can't even write his first name, then he must not be capable of anything more advanced. But Henry's teachers understand that his mind grasps many things that he just isn't able to transfer through his hands. They let him dictate answers and they write them down. Or they provide a couple options and have him circle the correct answer. Still working on the fine motor skills, but not letting it stop him from learning and showing what he has already learned.

That's good teaching. That's making a kid feel capable, rather than incapable.

blah

I swear it's like clockwork on this stupid blog: as soon as I write a suzy sunshine post like the one about how thankful I am, then I slip into a funk from which there seems to be no escape.

I am still so grumpy, and I don't think it's all just because our Easter plans got messed up. I am just irritated lately- irritated with our dirty house and smelly trash and the street I need to take being closed and our dirty car and the people at work and the Starbucks cup (decaf still) that is dripping on me every time I take a drink.

(And, no, it's not PMS. Not because I'm pregnant, Wendy! But it's just not the right week for that excuse.)

I'm even getting frustrated with the kids, which makes me feel even crappier. The weather has been so warm that I got out some hand-me-down soccer slides for Henry to wear. He could not manage to keep them on his feet, and when he did he did this shuffle walk- like if he lifted his feet off the ground the shoes would fly right off. I was getting so impatient with him.

I started to tell a friend at work about it (the person who had handed-them-down to us) and before I could even finish the story she said that her son hated those shoes and could never keep them on his feet. So I was chalking it up to Henry's-autism-makes-him-so-uncoordinated, when really the shoes are messed up.

Last night Henry kept saying "I'm sorry mommy." And I don't know why- he hadn't been scolded for anything. I think he could just tell I was mad and figured saying he was sorry would make it better. How sweet and pitiful is that?

bad weekend?

I'm having a kind of mind/emotion battle today, as I think about the weekend. My brain is trying to convince the rest of me that it wasn't a bad weekend. So why do I feel so grumpy today?
We were invited to a family birthday party on Saturday, and had all planned to travel with my mom and dad and stay in a hotel. I had everything ready to do Easter baskets in the hotel room.

Kate stayed home sick from school all week, but was feeling better on Friday (no school for Good Friday.) I had almost everything packed and ready to go Friday night, as the party was at 1 pm and we would have a 3-4 hour drive Saturday morning.

Then Henry woke up at 7:15 Saturday morning and said "I feel siiiiick. I'm feeling siiick, mommy." He felt very warm and his nose had run all over his sheets (ewww). So I made a quick decision. It seemed like the best thing to do was for Bill to stay home with Henry and take him to the doctor, while Thomas and I went on the trip with my parents.

Bill suggested that we could just give him some medicine and still try to go. But I thought of all the bad possibilities: he'd feel worse and worse and someone would have to stay back at the hotel with him so he wouldn't infect all the other party guests; he'd feel worse and worse and we'd have to miss school and work Monday to go to the doctor because we hadn't on Saturday (and Monday was another field trip day!)

So the family split up and the little one and I left town.

Henry spent the rest of the day feeling better and better. The doctor found nothing wrong.

And I spent the rest of the weekend feeling like I made the wrong call.

Now I know, in my brain, that I used good reasoning to come to my decision, and none of us are the worse for it. Henry had a nice weekend at home, while Thomas and I had a nice weekend visiting relatives.

But we stayed in a hotel, with a pool, and I know that would have been fun for Henry. And I think I'm even more disappointed at not getting to "show off" Henry. These were my aunts, uncles and cousins. They only see my kids once a year, at the most. They all know about Henry's diagnosis, and I kind of wanted to let them see the real Henry, not just the picture they might have in their mind, formed when he was 2 years old and screaming at some event...

My aunt had a little Easter egg hunt on her front yard that Thomas participated in. But the rest of the family didn't celebrate Easter at all. At first I thought we might do Easter baskets Sunday evening when I got home. But by the time I got home I thought that idea seemed even more lame than not doing them at all. The boys could really care less anyway, and the items I got for Kate's basket were things like a hand-held Boggle game that I thought she could do in the car. So now I'm being a huge baby and thinking about returning all the stuff I bought for Easter, the purchase of which was just a big waste of time.

Why do I insist on being so disappointed about this?

time to blog again

It's been a busy week- at work and at home, and it's been awhile since I posted. But I feel it bubbling out of me as I try to catch up on my blog reading.

I got all choked up reading squaregirl's post today- the part about acceptance: "Acceptance is key to growth." And I read something very similar from Oliver's mom today: "I find that what many (including myself) would see as progress on his part, is directly tied to progress of my own!"

I don't know if I'm articulating this very well, but it all seems tied in to what I realized last week about Henry's teachers. Yes, Henry is doing much better this year. But I don't think so much of that is that Henry has changed and gotten "better." I think he is now with teachers who respond to his abilities and who make him feel accepted. And he is thriving. And as the rest of us in his family understand him better, we are all thriving.

Yesterday Thomas and I picked Henry up at school. (Usually he gets a ride home from the school transportation service.) It is always nice to get to visit with his teachers (and it was nice to hear them tell me how cute Tommy is!) But even better was that Ms. H's supervisor was there. She went on about how well Henry was doing, and about how much they LOVE him. And about how smart he is--Henry's report card came home this week, and says that he can read 25 words!!!! I just have to pinch myself...

Let's see, what else is new?

-Well, gymnastics class for Henry seems to have been a failed experiment. I didn't take him on Friday, Bill did. Class was supposed to run from 5-5:55. But when Thomas and I got home around 5:45, Bill and Henry were arriving home also. So they bailed out of gymnastics early. Bill said that Henry kept saying "I'm too big to do that!" (We think he may have meant "not big enough.") Bill said that it was frustrating because the instructor would have the kids do something that Henry does all the time at home (like lay upside-down across a tube), and Henry would (OK, I know this isn't a PC term, but) freak out. So I'm kind of inclined to just cancel this class. Henry gets lots of physical activity at school (physical therapy and adaptive phys. ed., plus just playing on the playground, which he seems to enjoy more and more) and he does have swimming lessons once a week also.

-From the "mommy's perseverations" files:

I don't watch much tv. When the people at work talk about American Idol, I just hang my head in shame because I've never watched an episode! I'm not against tv at all- it's just that I'm too busy in the evenings to watch, and then I fall asleep in bed with one of the boys, and then I just stagger in to my own bed. Even when I do catch a program, I'm not likely to catch it again the following week, so I lose track of it.

But the past couple of weeks I have watched Lost. And gotten hooked. Last weekend we rented DVDs of the first season, and Bill and I stayed up Saturday night until about 2:30 am watching those old episodes. Are we cool or are we geeks? Never mind, I don't want to know the answer.

We still have many episodes to watch and it's about as close to a "date" as we are going to get, so I guess we will enjoy our evenings together watching Lost after the kids go to sleep.

-This will never turn into a "preachy" blog, but...

We did something cool in church this Sunday: Instead of an official sermon, the rector led us in some "contemplative prayer." He had us all sit quietly with our feet flat on the floor, hands on our thighs, palms-up, eyes closed. The really interesting thing to me was how similar it all was to the meditative time at the end of yoga class. Except this was better to me because we were sitting up in wooden pews, rather than laying on the floor. It was easier for me to keep track of my thoughts and keep them focused on prayer, rather than drifting off to sleep, as I often feared would happen in yoga class.

Even though I was up so late the night before, watching Lost, I felt very alert the whole time and it was so nice to have quiet time to gather my thoughts. And most of my prayer time was spent being thankful. Sometimes I am dumbfounded by how good my life is. (And I'd better knock on wood as I type that!) Do most of us realize how lucky we are? If the "worst" thing in my life is a child with a disability, who is happy and healthy and loving and loved? I need to spend more time giving attention to being thankful.

And now, for something completely different

(I intend to clarify some points on the last post, but need to get the psychologist's report out of my files. So, until then...)

Kristin, I haven't seen you post much about ice cream lately. This week I found a new treat that I love: Klondike strawberry cheesecake flavor bars. Mmmm. They have chunks of graham cracker crust stuff mixed in. Also, a friend in Toledo, Ohio reports that her favorite flavor of ice cream is
Toft's yellow Cake Batter. I don't think we have this brand around here. Do you have it up in Michigan? Anyone else? What's your favorite ice cream?

I've actually been trying to do the slim-fast thing lately. But also eating Klondikes at night for dessert. My husband assures me that there's nothing wrong with that. (As if I needed one more reason to love him.)

Henry had fun for the first few days at L's house, but we think this "inclusion" is getting to be a little too much for him. Today and yesterday he said he didn't want to go. A couple boys like to play a Super Mario video game, and he doesn't like that for some reason- I think it has scary parts and scary music. Of course he can just leave the room if they are playing, but the bad connotation of the music seems to stay with him and trouble him.

So I may try to take tomorrow off and have a mommy/Henry day for the last day of his spring break. I thought we could go to a dollar movie or... I'm not sure what else.

what's working for Henry

I feel like I keep writing about Henry's progress, but haven't shared what exactly it is that is working so well for him. Frankly, I'm a little uneasy about delving into this topic, because so many of you are so so educated about, and involved with, the different approaches to teaching "our" kids. I feel like I am fumbling along and then "hey, wow, something's working!"

Right now Henry only receives therapies (speech, occupational and physical) at school. When he was in preschool we did additional speech therapy once a week. But this fall, after he started full days of "real" school, I felt that Henry was getting enough serious work during the school day and we stopped doing the additional speech. His only extracurricular activity right now is swimming lessons once a week, and the new gymnastics that we will be starting on Friday.

Henry wasn't diagnosed until a year ago, at age 5 1/2. So we weren't really eligible for autism-specific types of programs until then. At the time of our diagnosis, the psychologist recommended ABA and basically said "you have to set up your own team. Good luck with that." I had NO IDEA where to begin, and really didn't get any helpful information from anyone.

As I explained in the Henry Chronicles, we started out intending to have Henry in the "regular" kindergarten class at our local elementary school, with an aide. That would be a half-day program, so I signed him up for the "Y" program after school. As the preschool year deteriorated though, that plan changed.

I was just looking through old e-mails to jog my memory. Just to let you feel my pain of last year, here is one I received in May from the director of special education in our school district:

"Staff from (our neighborhood school) went to observe Henry again in his preschool class and noted the increase of aggression that has resulted in the need for additional staffing in the class. The members, (the kindergarten teacher, the special educator, and the speech pathologist) all noted the level of aggression with concern as to whether the general ed setting will provide adequate support... She goes on to suggest 2 special needs classes available in the district, as an alternative.

There were concerns expressed by team members that his current levels of behavior may also be a challenge for the Y program and that this option may not meet his needs a we hoped they would when we met at the MFE meeting.
We can talk more and then try to set a meeting time to discuss the options. I am sure that the staff from (both schools) would be willing to meet even if it is after the school year has come to an end.
We could invite the supervisor from (the preschool) as well if her staff is not available.
Let me know how you would like to proceed. We do not want to pick a less restrictive setting if that would not give him the supports that it appears that he currently needs."

June 10th the special ed director called me to say there was a space available in a STACK program for the fall. (Now that I look back, do you think they were scrambling to find somewhere to put him?!) I contacted Henry's former teacher to get her input on this STACK program, as well as the psychologist who had diagnosed him. The teacher was enthusiastic about STACK. The psychologist was a little more guarded. He said that the class could be good for Henry, but that I should be sure to be very specific about inclusion goals in his IEP.

(OK, I've gotten a little off-track here, and wandered down memory lane. But that is helpful for me sometimes- to remember where we've been and how far we've come in less than a year.) If you click on the link to STACK, you can read about some of the basic principles of Henry's classroom. He has thrived there this year.

He is one of 5 students. 4 of them are kindergarten age and one boy is a 3rd grader, I believe. Some of the methods his teacher and aides employ include picture schedules and reward systems (he "gets 4 squares" to earn computer time, if he has gentle hands all day he earns a little reward like a sticker or laminated picture of one of his favorite tv shows or Disney characters.) His class takes a field trip every month.

That reminds me that this morning Henry told me he wanted to go to a spaceship on his next field trip. I'll have to remember to tell Ms. H!

A year ago, I thought I cared so much about Henry being "included" with the "regular" kids. Now it is one of my lowest priorities.

I love that he looks forward to his inclusion. His teacher said that he asks about it every day, and we plan to do more next year. But that can come slowly. I care so much more about his reading, math, saying "I'm sorry", taking turns with a peer. Having teachers who really really understand him and connect with him. That is what has always "clicked" with Henry. If he feels you like him, then he likes you and will do whatever you ask.

I don't want to get sad and bitter about it, but I know he has had teachers in the past who didn't understand him. Who found him unpredictable and, I think, frightening because of that unpredictability.

I'm so so thankful to be where we are now. So thankful that Henry (though his mommy is just bumbling through life sometimes) ended up in the right place. Somebody must be looking out for us.

It's been a weird week

Lately I feel like my life is straight out of That's Good, That's Bad.

Chapter 1. Laundry

Our dryer stopped working last Saturday- that's bad. I spent the week taking a basket of wet laundry with me every day to work, and then throwing it in the dryer at the laundromat each evening. I was really dreading it, but it was kind of fun- in the way that sometimes it’s fun to shake up your routine-that's good!

Tommy loves the laundromat of course, because all the machines have glass doors and are on his level, so he can see the stuff spinning around. They also have a basket of beat up toys and a couple couches and a tv. A couple nights the weather was so nice that we put a load in the dryer and then took a long walk. Afterwards I had so much energy and my mood was 100x improved. It’s so amazing what a little exercise and sunshine can do.

Chapter 2. Gymnastics

I finally called last week to inquire about a special needs gymnastics class nearby. Their spring sessions were just starting last week, and they had room for Henry- that's good! Henry's spring break started Friday, and he stayed with Tommy at L's house. I thought I would pick them both up and we'd head over to check out the 5 pm class. Henry protested the whole way there: "you don't want to go to this gymnastics class! You want to wait in the car!" By the time we got there, he was crying and I had to carry him in. That's bad.

Once, inside however, he changed his tune. He saw all the fun equipment and wanted to check it out. That's good. The previous class ended and I had both boys take off their shoes and run out onto the mats. Ooops. Turns out they were supposed to "wait behind the red line" until it was time for class to start. So I had to drag both my sons out of their new heaven on earth, to wait. That's bad.

It was completely idiotic of me to attempt to take both boys at the same time. What was I thinking? The instructor tried to have Henry participate, but he was way too dysregulated by then. She had the kids each sit on a colored square and then run in place, etc. He was just a puddle by that point. We ended up leaving, but I told the instructor that Henry would be back next week. I will definitely update on that. I don't know what to anticipate...

Chapter 3. The restaurant

Even after all the drama of the gymnastics class, I wasn't done in yet. Maybe I wanted to end on a high note, or do something special because it was spring break for Henry. So I suggested we eat at Bob Evans. This went very well. We quickly ordered french toast and pancakes, which the boys shared and gobbled up happily. Henry even flagged down our server, Kelly, and requested an additional side order of bacon. That's good.

They finished eating before I did, started arguing, and Thomas pooped in his pullup and started talking about it loudly. That's bad. So we left a little prematurely.

Chapter 4. Basketball Banquet

Kate's basketball banquet was Sunday. I had asked my parents (as I've done other years) to come stay with the boys while we attended. But when I RSVP'd to the organizer (one of the captain's mothers) that there would be 3 of us, she replied "you're not bringing the little ones? Oh, but this is a family affair. Everyone else is bringing their siblings. Well, they are certainly welcome." So I felt a little ashamed and decided to bring the boys.

We arrived at 4:30 (and didn't leave until 7:30. Does that tip you off as to how this is going to go?) Food was spread out on the tables, but no one was eating yet. One of the moms opened up her fruit bowl and started giving Henry some. Then he moved on to dessert. (Still before anyone else was eating.) He cooperated pretty well for about the first hour. He requested something out of a vending machine, and I was willing to comply to keep him quiet. But it seems that they turn off the machines on the weekends. So that really threw him. "The machines ARE working mommy!" By the time Kate was introduced (the main thing we were there to see, duh) both boys were screeching and running down the hall to the gym. We then retreated outside. That's bad.

I took the boys over to the playground. They clamored right up onto the equipment, started laughing and running around and racing back and forth on the "wobbly bridge." Henry went over to a chain ladder wall. He twisted his arms around the chains and said "I'm stuck in the chains! Please help me!" DID YOU READ THAT? HE WAS PRETENDING! I will have to ask his teacher- this must be something they've done at school before. So I would pretend to free him from the chains and then we'd do it again. Then we'd say "let's get away from those chains!" and run to the other side of the playground.

This was all so new. The "old" Henry never used to want to play on the playground. He either seemed afraid, or just unsure about what he was supposed to do, and kind of wondered what the point was. I can tell they've been working on it at school. This was very different. That's good.
___________

I think this will be a good spring break for Henry. He had a lot of fun with one other boy on Friday, jumping on L's trampoline. He had so much fun, in fact, that he got injured and broke his glasses! The injury is sort of a "burn" caused by face-planting on the trampoline. And the glasses were easily fixed at the eye doctor's office the same evening. It's so great to see him playing like such a boy.