"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.

8 years ago

This photo is for Xia. Getting ready for Henry's birthday and reading Xia's blog got me thinking about the summer I was pregnant with my first son.

Please note my belly button. I mean, how can you miss it? I actually put a band-aid over it to try to disguise it, but I think that made it more prominent than ever.

I remember being so hot that day! This was actually the second family wedding we attended in August 1999. I was in the other one. It was hot that day too.

Also, before anyone comments on the scrapbook, a disclaimer: I do not scrapbook. My mother does. She made little ones like this for both boys, and all I had to do was slap the photos in. I don't think Tommy's are actually GLUED in yet- just inserted into the correct pages. Maybe by the time he's 8...

This morning Henry woke up at 4:45!! He was so excited to look at the Star Wars books he borrowed from the library. He just got his own library card a couple weeks ago, and had reserved a book that he wanted. Yesterday he and Daddy went to pick it up, and Henry is buzzing with the excitement of it.

I want to fight with you!

The other subject on my mind lately has to do with Henry and friendships. Tara posted a few days ago about playdates, and when to force the issue with her son.

Henry has never shown much interest in "playing" with anyone. Some of his awkward attempts have been heartbreaking. For example, in preschool he would "tickle" classmates. (He would do it with us also.) But this tickling was way too rough- he would poke and pinch with his little fingers. It was an attempt to engage someone, but not a very successful one.

One evening last fall I remember seeing two boys running down the sidewalk together and thinking that Henry may never have a playmate like that. It made me sad, and still does a little.

I have learned a vital lesson in my relationship with my daughter, however, that carries right over to Henry: my kids are not going to be like me. It took me years to figure out that Kate is not going to one day wake up and like all the things I like. The same way I'm not going to wake up one day and understand basketball.

So Henry might not have a gang of friends to play football with on the weekends- that's OK. There are worse things than being a bit solitary. He will not be likely to fold to peer pressure, that's for sure!

That said, we are working on peer-relationship types of goals at school: learning to take turns, make conversation, etc.

And I see some encouraging signs. He spent a week at Tommy's sitter during spring break, and a few days this summer. I assumed that he would spend his time doing solitary things: reading or playing on the computer. But both times L reported that Henry played a lot with the kids his age, and the days when it was only "little kids" there with him, he was bored. He likes to "play fight", i.e. play that they are Power Rangers, or Jedi Knights. So that's a pretty mainstream thing to play. We just have to make sure he understands to ask the other kid if he wants to play fight first!

At the IEP meeting, Ms. H was talking about Henry's success with inclusion. I asked if she thought the other kids thought of him as "the weird kid". (I know, not politically correct term. But that's the kind of stuff I worry about, deep down. I don't want my son to be whispered about as the weird kid.) Ms. H said "oh, no, not at all. The other kids seem to really like him." And then our District Special Ed Director pointed out that, at this age, kids don't really judge in that way. They just say, "hey, that kid likes soccer and so do I. I'll be his friend." But they don't say "oh, that kid likes Disney movies and Power Rangers. He's a weirdo."

So I realized that I was giving that a little too much worry.

you want me to tell you...

Henry has been asking some tough questions lately. And I like what they reveal about his development.

It's been a year or more since Henry started describing the way characters in his favorite movies were feeling: "Simba is saaad" he would say, moving to get right in front of my face and look me in the eye. I was happy with that development because, for a long time, Henry ran away from any discussion of unpleasant emotions. He ran away, literally and figuratively- in speech therapy they would show him those posters with a series of emotion faces and he would cry and yell and refuse to look at them.

So it was good when Henry became able to label emotions and identify how someone was feeling. But now I realize something was missing. (I have not been trained in RDI, but I think this is the kind of missed link one is getting at with that program- comments are welcome here on this subject. Teach me!)

Over the weekend as he watched some favorite Disney movies, Henry again would comment "Simba is sad." And I would agree (Henry always wants you to repeat back what he has said. If you don't, he continues to repeat it until you do.)

But then Henry said "you want me to tell you why he is sad?" (His pronoun use has become much better, especially in routine situations. But in a situation like this, where he is venturing into new territory, he lapses back into his "backwards" talk.)

He also asked about Aurora (Sleeping Beauty): "you want me to tell you why she is sad?"

Those are tough questions kid. Simba is sad because his father is dead and Simba thinks he is responsible for his father's death. I'd really rather not explain that. Aurora is sad because she just found out that, although she just met a handsome stranger in the woods, she is being forced to marry a prince she's never met. (Sleeping Beauty, by the way, has to be the dumbest and most offensive of the Disney movies.)

So, although he has long been able to identify someone as "sad", he has never understood WHY they are sad. It's pretty hard to find your way through life if you're missing that much background information. What is a good way for me to explain these things to him?

(It's also interesting that he asks questions in such a convoluted way lately. It shows me how much his mind is really working! He will look out the window into the back yard and say "you want me to tell you what I did with the slip-n-slide?" Such a more complicated question than "where is the slip-n-slide?")

confession

I got impatient with Henry yesterday. I don't mean to announce that as if it's the first time that's ever happened (or the last), but I do feel sad about it.

Yesterday we had perfect weather. Blue sky, cool in the morning but warming up to 80 by the afternoon. Thomas, Bill and I were in and out of the house all day.

Henry doesn't like to do anything outside. When he was 2-3 he would want to walk around the neighborhood and look at cars and have the same standard conversation about certain houses and landmarks. He also used to like to sidewalk chalk, although it would just be him dictating to me what he wanted me to draw. But now he just likes to stay inside. He will play on the playground when we visit one, but just playing outside in the yard holds zero interest for him.

Yesterday I suggested a trip to the library and then the grocery store, as a way to get him out of the house. Those both went well. But once we got home he just wanted to watch a DVD or lay all his crumpled and well-loved "Disney papers" all over the floor. Chicken Little seems to have replaced Lady and the Tramp as his current favorite subject, and he carries around two Chicken Little sticker books, a Disney Magazine with Chicken Little on the cover, the Chicken Little book on CD book and some printouts from the Disney website.

Anyway, last night Bill was cooking out, and I wanted to sit outside with him. Tommy was coming in and out of the house, and Henry was in the house. Henry kept asking me to find one more of his papers, and then a particular Star Wars book that was my brother's, (from back when Star Wars, Episode IV was the FIRST Star Wars.) I couldn't find the book anywhere and he kept perseverating on it. I finally just told him (in a not very nice way) "Henry, it's nice outside and I want to go outside- why do you have to stay in here with all these movies and papers spread all over the floor?!" He just looked at me and said "NO!"

When I think about it rationally, he is probably feeling extra dysregulated. The end of the school year is coming, and he knows that he'll be going to a different school next year. Also, his nose was running all day long yesterday, and the Claritin I gave him didn't seem to help.

It's just hard, as he gets older and more communicative. Sometimes I feel like I should be able to have a "rational" conversation with him in which I say "hey, it's nice outside. Let's turn off the movie and go outside." And he says "ok mommy."

(But lots of times I wish I could have a rational conversation like that with my teenager also, and it's not so easy.)

It's not all about autism. It's just about being a mommy. I was frustrated with Tommy yesterday too, because he wouldn't stop climbing on me and wanting juice, but NO not THAT juice, a different juice. Etc. etc.

Bill gave them a bath and I tried to put them to bed early. We read a book together in Henry's bed. But both boys kept whining that they wanted a different book or that "Bubba push me." Bill could hear us on the monitor and he said it didn't sound like me when I said "both of you need to be quiet or we're not reading any book."

I don't want to be that mom- the one who's pissed off and short with her kids all the time.

So that's why I'm going to take a walk this morning- some time for just me. Maybe today will be better.

My son, the model; Summertime; and a question

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.)

___________________________________

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.

progress reports

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.

_________

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.

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.

10 things about Henry

(This picture is almost a year old, but I like it. At the time, it was really something just to capture these two interacting at all. It is getting better now.)

Hmmmm. This will be a bit of a challenge, as I don't want to repeat things that you already know, like "Henry likes puzzles".

1. His middle name is Davies, which is also his father's middle name, his grandfather's middle name, and was his great-grandfather's middle name.

We mostly just picked the name Henry because we liked it, although my grandmother did have a brother named Henry.

2. Henry never really had a nickname until Thomas started calling him "bubba". That has kind of stuck with us now.

3. Henry loves to eat fruit. He hates to eat vegetables. He will eat a pound of grapes but will gag if you force him to eat one cube of carrot from the mixed vegetables.

He also likes to eat sausage links, pasta with tomato sauce, cereal with milk (but with his fingers- not with a spoon. Ugh.) He will not drink milk.

4. When he was small Henry used to like to watch the weather radar on tv.

5. Henry has always loved books. He has always loved to be read to and I just can hardly wait until he can read. I feel that day approaching and I know it will open a whole new world for him.

6. He has never had a successful haircut by a professional person. I (who have no skill whatsoever) have always cut his hair in the bathtub. Luckily he has those messy waves which hide my mistakes.

7. Henry likes to "help" me bake. He gets a chair to stand on and likes to talk about the recipe. Sometimes he'll stir a little.

8. Some of you have also said this about your children- Henry has a way of charming people and making them fall in love with him. It's very interesting that these autistic kids, who can be socially inept and unaware of others' feelings, have their own charm that is so irresistible.

9. At the zoo last week, Henry decided his new favorite animals are the reptiles. (Before that it was the "sea creatures".) We visited the reptile house once and then once more before we left. We stayed for the longest time, watching those snakes that don't really do much. I'm curious about why he found them so intriguing.

I had been wanting to set up an aquarium, but now I'm wondering if we should get a lizard or something. Are there some types that eat "lizard food"? Because I definitely don't want to have to keep crickets or mice in the house...

10. At age 9 mos., Henry tested allergic to cats and milk. When we had him tested again last spring, he tested allergic to NOTHING. And let me tell you, the testing process (holding him down to have his back pricked over and over) was not pleasant. I guess the resulting information was worth it.

(#25) The Henry Chronicles, Volume 4

Some of you seem to be reviewing 2005, so I thought it was a good time to write my final Henry Chronicles installment, since I left off about this time last year, when Henry was really struggling at preschool/daycare. We found another spot for him, in a small, special-needs preschool class that just met in the afternoons. My friend, L, agreed to take him in the mornings and the school transportation service would transport him to the class and back home. We were all (teachers, administrators and parents) really hopeful that this small class with experienced teachers would make a big difference for Henry.

It didn't. He had the few-week honeymoon period where everything was great and the teachers acted like they wondered what all the fuss was about. Then he started pinching, scratching, screaming, kicking, knocking over chairs, etc, all over again. His teacher kept calling me at home, asking me if I had any suggestions for her. I was like "if I knew how to make him stop acting this way, I would have told the teachers at his old school. You're the one trained in special education." Of course, that's just what I was thinking. I didn't say it, I just kept trying to think of suggestions for them.

Around the same time he switched schools (February), we finally got our PDD diagnosis. The psychiatrist basically asked me if I wanted him to give the diagnosis or not! Like I would want my son to continue struggling in regular classrooms, being treated like the "bad" kid? Why did he approach it that way? I guess some parents don't want their child labeled. But by that point I was welcoming a label, if it would help Henry's teachers and everyone else know how to relate to him. We initially discussed placing Henry in the regular kindergarten class at our neighborhood school, with an aide. But the more trouble he was having as the preschool year wound to a close, the school district started balking at that idea.

He spent the summer at the Easter Seals program, which went pretty well, but he was still showing a lot of aggressive behavior, and refusing to cooperate with a lot of classroom activities.

We ended up getting a spot in a STACK (structured teaching for autistic and communication-delayed kids) classroom in another school district about a 20-minute drive away. I was slightly disappointed that Henry wouldn't be attending the neighborhood school, but this arrangement is actually much better because it's a full-day program. In our school district he would have attended a half-day kindergarten class and then been in the Y program the rest of the day. That would surely have been an over-stimulating disaster.

I started off the school year trying to give lots of suggestions, as that's what all his other teachers had seemed to want. The others had all found Henry to be a completely unpredictable mystery. Very quickly I realized that these STACK teachers didn't need my suggestions. They were totally on top of everything. At the first IEP meeting this fall, they told me they had Henry all figured out. Wow. What a great feeling.

That doesn't mean he doesn't have "rough" days anymore. But they are more isolated incidents, rather than constant behavior problems. His language has vastly improved- he's using "I" appropriately about half the time now, I'd say. He will greet people and answer a few questions without prompting. He just gets up and goes to the bathroom now when he needs to. (A year ago we had to constantly check on him and ask if he needed to go.) He is cordial to his brother about half the time now. And when he is frustrated, he is using words rather than screaming or pinching, etc.

And that picture at the top-- that's Henry playing with some toys he picked out at Target. He was making the dragons fly. I overheard him saying "hi little dragon" which, as far as I know, isn't a script.

We change our expectations. At the basketball game Thursday night, 2 older boys ran over to say "hi" to Henry as soon as we walked in. He said "hi" dutifully, then didn't give them another glance all night. He's far from a typical kid. But he enjoyed watching the game and we stayed to the end- I consider that a great night, in Autismland. (Kristina, you need to trademark that word!)

I'm resistant to draw conclusions. Is Henry's school placement making all the difference? Is he just older and so physically, emotionally, mentally ready to make some strides? Was the bad preschool experience in the spring inevitable after a REALLY bad situation, and they just "broke him in" for the current class? I guess time may tell.

Our journey with Henry so far has surely had some low points- some times when I felt really in the dark and didn't have any idea what to do next. But we have been so blessed with friends and educators all along the way who have given good advice and, if they weren't sure what advice to give, they gave us moral support and gave Henry unconditional love. I wish, wish, wish, I had known some of you 4 years ago- you could have held my hand and shed a little light on the confusion. Maybe I would have shed a few fewer tears.

Well, enough with the "what ifs". Here's to 2006!

The Henry Chronicles, Volume 3

(Sorry that this is sooo long. But it's very helpful to me to get it all down, even if none of you want to wade through all of it!)

Let's see, I left off around December, 2002, when Henry was 3 1/2. He was evaluated by the school district's speech and occupational therapists, and determined to be a "preschooler with a disability." I can still remember how that meeting made me feel. My husband and I sat at a table of experts who gently tried to tell me all the things that were "wrong" with my child. (That's how it felt to me at the time. Now I'm a veteran of these meetings and I know that we are all there with the goal of helping Henry achieve the most out of his education.)

I think that was the day my heart broke a little. That was the day I first realized that my son might not be everything I hoped for him to be. He might not be president. He might not be the football captain and all those dumb ambitions you have for your child before you realize what's really important. Most of all, it made me realize, like a slap in the face, that he wasn't "perfect." Now, you can all tell me that he is perfect, and I wouldn't argue with you! But let's just say that was a bad day. And no one had even mentioned autism. Instead of going back to work, I went back home and crawled into Henry's bed and cried. Is that a pitiful image or what?!

So Henry qualified for special services. But I work full time and he needed full-time care as well. This was to prove an obstacle for the next 2 years.

I work at a large university, which has a child care center with a waiting list a mile long. A friend with a child attending the center told me that she thought they offered special needs services there. (Thank God for all the suggestions of friends, or I don't know where I would be now.) I was thrilled to find out that he could attend the center full time, receiving special needs services, and at a reduced rate, as my school district would pay a portion of his education. He started preschool there in the fall of 2003- when he turned 4 years old.

Henry did well at preschool that year- I was amazed with how he adapted to the routine and the independence required- lining up to go outside, scraping his plate after lunch, going potty independently, etc. He loved working with his therapists and with specific teachers. He's always been very responsive to one-on-one stuff with an adult. Not so crazy about all the other kids. The services provided were on an "itinerant" basis: he was in a room full of typical kids, pulled out for services once or twice a day for an hour or so.

That summer (because he wouldn't receive school-based services in the summer) he attended a program at Easter Seals. That's where he started taking swimming lessons. He seemed to do really well there- in a class with only "disabled" children of various kinds (there were blind children and autistic children and children in wheelchairs, etc.), and teachers who were trained to work with special needs kids.
At the recommendation of his teachers and therapists, I pursued an evaluation at the autism clinic in our Children's Hospital. Of course, it took months to get an appointment.
Fall of 2004 was rough. Henry went back to preschool and started off well, but his "behaviors" quickly escalated and overpowered any other learning that might have been taking place. He was very aggressive toward teachers and other children: knocking over chairs, kicking, pinching and scratching. I believe he was trying to communicate. These behaviors were aggressive, but not violent, if you see the differentiation I'm making. They were very deliberate- done while looking at an adult, watching for a reaction.
The special needs teachers were willing to work with it, but that wasn't good enough. As I said above, they were only working with Henry an hour or so a day. The rest of the time he was in this classroom where the teachers didn't want to or didn't know how to work with him. They mostly let him work on the computer all the time, because it made him happy and it kept him away from the other kids.
There were a few days in November of '04 when I brought Henry to work with me because I was so tired of picking him up and hearing "He had another really bad day today."
Believe it or not, at this same time I was meeting with the doctors at the autism clinic and hearing "we don't think he's autistic." It's true. So his teachers are acting like he's unteachable and they're going to kick him out of daycare/preschool, but the "experts" are saying he's not autistic. It was a really low point for me.
Finally, during one evaluation, Henry threw such a fit. I was terrified that they would just tell us to leave and come back in a month, dragging the whole process out even more. I was watching through a mirror as Henry threw toys around the room and scratched the psychiatrist's face!
Little did I know that that interaction would finally show the doctor Henry's true colors. His "non-compliance" (that term made me laugh out loud when the doctor used it) was an indicator of autism, along with some of his other traits.
Reading about all of my blogging friends' children, I don't know how a doctor could NOT think Henry was on the autism spectrum. But, I can't be bitter- just have to move on.
I'll save the rest for another installment.

The Henry Chronicles, Volume 2

My last post is doing just what I hoped it would: starting a dialogue. Bill and I have often wondered about Henry's birth and subsequent problems, and their relationship with autism. Which came first- was he born with autism and that triggered some other difficulties? Did his difficulty breathing cause (for lack of a better term) brain damage of some kind that triggered the autism? Or are all these things just unrelated coincidences that make Henry who he is? And does it matter?

Kristina always says things so perfectly, and as she commented, if one thinks about this too much, "it's an ocean of regret". So I often push these thoughts away. Just as many parents may agonize in hindsight over the choice to vaccinate their child, fearing afterward that it "caused" that child's autism, I can't let myself think too much about his birth. Was it the herbal tea I drank during pregnancy to help me sleep? Did it contain some kind of dangerous herb? Should I have demanded to start pushing before my doctor arrived? Was it because I swam in the lake that summer? That last one may sound ridiculous, but who knows? We start to question everything. Unlike many of the children I read about, who seemed to develop normally until a turning point around a birthday and/or vaccination, my Henry was always on the small, slow end of every chart. I don't see a correlation with vaccinations in his case.

So I welcome you to Henry's second year. He was back in the 3rd percentile for his age, and we thought that with his allergies conquered, we'd have smooth sailing ahead. He had started sitting up around 8 months, and began crawling at 13 months. Walking came at 18 months. All of these, according to our pediatrician, well within the normal range and not surprising considering his rough first year. He was just catching up.

He did have a fondness for throwing his plastic stacking cups around on the kitchen floor and chasing them. I didn't really think of it as "spinning" them. It made him laugh and smile- I thought it was cute.

When he was 1 1/2-2 1/2, we would take lots of walks which involved looking at cars, both moving and parked. I found this kind of boring, but not alarming. I had friends whose children obsessed over rocks they found, or taking toys apart and removing the batteries. Kids just have weird habits and interests, right?

Around age 2 1/2, our beloved friend and child care provider, "L", dropped the bombshell. One day when I arrived to pick Henry up, she said "I want to talk to you about something..." She said she thought Henry might be autistic. She had printed out some information from a medical website (I forget which one). I was defensive and argued with her. Believe it or not, I didn't cry. (You may have picked up on the fact that I'm quite a crier.) Not until I got in the car anyway. I called my mom for reassurance and she provided it. Then I called the pediatrician's office and made an appointment.

When we showed up for the appointment, Henry cried and clung to me. "An autistic child wouldn't do that" said our doctor. I feel like that was in the dark ages of autism awareness, but it was less than 4 years ago.

I went ahead and scheduled a speech and hearing evaluation for Henry, because he was clearly delayed in that area. By the time they could see us, he had celebrated his third birthday.

I did cry on his birthday, out of happiness, because we got him some letter and number flashcards for his birthday, and he could easily name all of them. "There's nothing wrong with him," I thought. "He's so smart." When the speech experts asked me how many words he could say, I truthfully answered that he knew hundreds. I later realized that he knew hundreds of nouns. Names for things. He didn't put any of them together with any other words to make sentences. And while we could understand all these words he said, no one else could.

The speech center referred us to an ENT, who recommended tubes and removal of Henry's adenoids. I remember the ENT saying something like "I don't think that's all that is going on with him, but it will be a good start." Did he think Henry was autistic? I didn't ask- probably didn't really want to know.

So we had the surgery and started speech therapy once a week. I also had Henry evaluated by our school district, to see what services he might be eligible for.

To be continued...

The Henry Chronicles, volume 1

Henry was born September 1, 1999, after an uneventful pregnancy. My blood pressure was up a little toward the end, but it was summertime and my doctor just told me to lie down for 20 minutes after work every day. He was born 2 weeks early, which was not considered premature.

My coworkers had a baby shower for me the evening of August 31. I was having pains the whole time, but just thought they were false labor. I drank some tea and tried to go to sleep, but my water broke around midnight and we were off to the hospital. Kate (then 9) came right along and watched the whole thing. (Yikes!) Things moved faster than anyone expected, and we had to wait for my doctor to arrive before I could start pushing. I didn't have any pain medication, and he was born at 4:30 am. The whole thing seemed, well, not pleasant, but easier than I had expected. Little did I know that much of his future would seem, well, harder than I had expected!

Henry was not breathing well when he was born. They briefly allowed me to say hello to him and then whisked him off. I don't remember how much they explained to me. I think I was in such a fog of "yippee, I just had a baby" that I didn't realize something was wrong. Maybe they always take your baby away immediately. How should I know?

He stayed in the NICU for 18 days! Yes mommies, 18 torturous days, considering they couldn't really seem to put a finger on what was wrong. He just wasn't breathing well- his oxygen intake wasn't good- his respiration was very rapid. (This is all from my memory. I really need to ask for a copy of his hospital records. I think I remember reading that one of you did that recently.) He was in the NICU and was like twice the size of most of the other babies in there!

I was faithfully pumping breastmilk and bringing it to the hospital with me. Off work for "maternity leave" but not taking care of a baby. Sitting in the hospital rocking my baby, talking to the nurses. Looking back it kind of turns my stomach to remember. God, that was awful. It was so awful but I couldn't even appreciate how awful it was. You know when you first have a baby you're kind of in a daze, trying to figure out how your life has changed? So mine had just changed to this- now I go to the hospital every day.

Finally, he came home on September 18th. Ahhhh, bliss. Now I could take him on walks and read him books and lie awake watching him sleep. We had a few really good months before he started getting sick- ear infections, bronchiolitis, this chronic cough that wouldn't go away. We tried an inhaler (with an infant??!!) and various antibiotics and asthma-type medicines. He didn't gain any weight between his 6 and 9-month checkups.
A friend suggested that I take him to see her daughter's allergist. THANK GOD for that suggestion. The allergist took one look at him and said that he looked "like an allergic child." (Henry had spots of eczema on his head various areas of his body at this time- poor little guy.) They ran a set of allergy tests which came back allergic to cats (we had one) and MILK. He had been drinking milk-based formula ever since he was a month old! (The breastfeeding thing totally didn't work, as they fed him from a bottle in the hospital.)

We switched to soy formula that day and sent the cat to grandma & grandpa's house that weekend. The coughing went away and Henry gained weight. He was back "on the charts" for his first birthday.
(Coming in Volume 2: enter autism)