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!
Hi friends. I've missed you! Been checking some of your sites when I get a minute, but I haven't seemed to have enough minutes in a row to write anything myself. Today I took the boys to their sitter and Kate and I are going to do some shopping, but she's at basketball practice and I have AN HOUR ALONE IN THE HOUSE. Can you feel my excitement?! And, like a geek, I'm at the computer. I am enjoying this bit of time to myself. I'm listening to the CD Bill got me for Christmas: Hope and Desire by Susan Tedeschi. I wanted to tell you about my other Christmas gift: this necklace. My first piece of "autism jewelry". I actually prefer to think of it as "Henry jewelry" because it just makes me think of Henry- not of his autism. But maybe it will also raise some awareness and start some conversations when I wear it.
The past week has exceeded all my expectations. Henry has behaved so well- using lots of words and not so much screaming, and also playing with some toys. We had Christmas at Grandma & Grandpa's house, then again at home the next day when Kate came home from her mom's house. We visited the zoo one day and last night went to a college basketball game- Henry was pretty-much-perfect on all occasions. I know that he is over-stimulated and the lack of structure and lack of school are getting to him. When we are just at home together he has been tormenting his brother a bit and doing more screaming and arguing. But I am usually able to have him play quietly in his room for awhile, and that helps.
I will post some pictures soon and also finish my "Henry Chronicles". For some reason the past year seems like it will be hardest to sum up. Maybe because I am afraid to draw any conclusions.
Wishing you all a peaceful 2006.
(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.
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...
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)
This was one of those times when Tommy did something totally typical that made my heart stop beating with the excitement of it.
I was driving him to L's house today (his babysitter, and Henry's before him) and Tommy was jabbering on and on. Suddenly I heard him say "not nice!" "Mitchell push David." I started listening harder and realized that he was telling me something that had happened the day before. "Mitchell push! Not nice! David fall down. David cry!"
Henry has never once recounted anything to me about his day. Not spontaneously, anyway. He will tell me "we went to the zoo" or something like that about a field trip. But never, never anything about interpersonal relationships- especially between 2 other children.
I said early on in this blogging adventure that it feels somewhat wrong to compare my kids, but this is my blog, and this is an issue that pops up in my life and is important to me to discuss. When Tommy does something new, that Henry never did because of his autism, it makes me celebrate that Tommy's doing it, and it also makes me grieve a little that Henry didn't do it, and maybe never will.
I believe this is different than just having 2 kids with different personalities. For example, having one child who likes to play with play dough, and one who doesn't. The child who doesn't isn't missing out on a huge chunk of the human experience because he doesn't play with play dough. But our autistic children are missing out because they cannot (or will not?) tell us about their day. This is what we do with people we care about- we share things. Verbally, usually.
(Don't even get me started on the tangent that Henry should be able to tell me about his day from a safety standpoint- what if he is being mistreated or picked on at school? And isn't telling me? I will not be able to sleep at night if I start thinking about that.)
So, this was an exciting morning for me, with a little bit of sadness thrown in for good measure.
PS- L said that Tommy didn't tell me that he also had a time out for pushing David down. Selective communication on his part!
Here is the Christmas card picture. I was able to snap 2 photos one night before the teenager ran out the door to a basketball game. This is the first picture. In the second, Bill had walked in the room and said something and so both boys are looking at him instead of the camera. So this has to be the one.
Oh, yeah, you may have noticed that I finally cut Henry's hair.
We had a busy but fun holiday weekend. We went to a basketball game (Henry and Tommy marched around when the band played), Henry helped me wrap presents and bake banana bread to give to his teachers, and we also played in the snow a little. Henry requested playing outside, which he doesn't usually do. He awkwardly made a snow angel, and then mostly asked me to do things- "you want me to throw another snowball at the tree!"
This has been a pattern throughout Henry's life. Rather than actually trying an activity himself, he wants you to do it, while he watches. For example, there was a brief time when he was 3 when he liked to paint and color. Somewhere along the line, he started asking us to draw a picture or write a word. That quickly evolved into us doing all the work while he watched. I think it has something to do with his coordination, and his frustration with not being able to do something "just right." He never wants to color now. I have been able to get him to work on connect-the-dots and mazes, but only if I "help him" (we both hold the pen). When I try to let go and get him to do it himself he quickly gets frustrated. I think he just doesn't have the strength in his hands, and that is something the OT is working on.
Yesterday in the snow I tried to get him to help me make snowballs, but it seemed that he could barely manage to scoop up a handful of snow. I think his gloves made the activity more cumbersome, and I need to get him some mittens. He can't get his fingers into gloves for the life of him, so I'm sure that inhibits his coordination. Tommy wears those "baby" mittens that just cover your whole hand. I wonder if they make them in a big enough size for Henry?
It's hard to watch him struggle with something that comes so easily to other children. I hope over time he will gain both coordination and the confidence to try something without being afraid of doing it "wrong".
One thing we didn't do this weekend (although it was requested frequently) was go to the library. It just didn't fit in to the schedule. I didn't do it consciously, but I ended up shaking up his expectations a little, something I talked about in my last post.
I can tell they have been working on pronouns a lot at school. This weekend he used "I" many times correctly, without being prompted. He said a few beautiful phrases like "Mommy, it's fun wrapping presents with you" and "I like making banana bread with you mommy." They still sound a little scripted, but they are music to my ears!
We have our first real snow on the ground, and the boys are excited. This morning I had to dig out the boots and snowpants. This picture was our Christmas card attempt 2 years ago (I was about 6 months pregnant with Tommy.) I don't think we actually mailed out cards that year- I don't know why, because this picture is pretty good. Anyway...
Charlie's mom talked a couple days ago about packing his lunch, and the "huge responsibility" of that action. This touches on one of my frustrations with being a mom of a special needs kid.
Some mommy tasks, like packing a lunch, just should not have so much riding on them. We tried having Henry buy lunch one day at school, but that didn't go well. His teacher said that she thinks he likes the comfort of bringing lunch from home. I'm happy to do that for him- that way I can be more confident that he'll actually eat.
So I have to include some of Henry's favorites in the Fantastic Four lunchbox, so he'll be sure to eat and have a productive and cooperative day. But I can't just brainlessly pack the same thing in his lunch every day, because then he'll grow to expect only the same things in his lunch and if I should run out of BBQ potato chips one day, and send a granola bar instead, he'll flip his lid.
I get worn out by walking the fine line between giving my child comfort and familiarity with his favorite things, and realizing too late that I have backed myself into a BBQ chip (or, at dinnertime, "pasta with tomato sauce") corner.
I end up questioning every routine. "Wait, did I play this CD for him last night when he went to bed? I'd better play a different one, or he'll get hooked on this one." One good thing is that because of various sports schedules, etc., we don't usually follow the same routine in the afternoons and evenings. Sometimes he goes to the gym with Bill while he works out, sometimes goes along to basketball practice, sometimes gets to hang out and watch a movie at home, but not every day. I guess that keeps things from getting too predictable for Henry.
One morning when he was protesting getting in the car to go to school, I said in a soothing voice "I know it's hard on Monday mornings." So now every morning when I'm buckling him in, he says (in an imitation of my "soothing" voice) "I know it's hard on (-insert name of day here-) mornings." It's funny and touching to me- I think Mondays are particularly hard sometimes. But I guess Henry thinks each day is just as hard as the last! Or maybe he's trying to comfort his frazzled mother. That's probably it!
Prompted by Irish. I'll try to think of something interesting:
1. I met my husband through my step-daughter. I worked at her daycare center when Bill was still married to his ex-wife. After they split up (and I didn't work there anymore) he asked my former boss for my phone number.
It's kind of cool the way it worked out- keeps me from wishing he hadn't been married before, because if he hadn't, I never would have met him- get it? Everything happens for a reason.
2. I like to eat ice cream out of the carton when my kids aren't around.
3. I majored in journalism in college (not creative writing, obviously, judging by the really creative name of my blog).
4. When something makes me laugh REALLY hard, I start crying. It's kind of a hysterical, out-of-control feeling, but I like it.
5. I am a Harry Potter fan. I read books 1-5 when I was pregnant with Tommy. Recently I was watching a special about movie #4 and Tommy got all excited and started saying "Harry Potter, Harry Potter mommy!" It kind of freaked me out, like maybe I brainwashed him when he was in utero.
6. I have 2 younger brothers. The older one recently moved from Chicago to Washington, DC and the youngest lives in Sydney, Australia. (Their lives are a lot more exciting than mine) :-)
7. Like Sal, I also admire Oprah. And Madonna and Hillary Clinton. But I'm not here for a debate...
8. Music I love: Van Morrison, U2, Sinead O'Conner (what is it with the Irish theme?), Nora Jones, Elvis Costello, Aretha Franklin. I guess this music reflects my age- I don't have much occasion to listen to AC/DC anymore. (But when I hear that, I still love it.)
At work I listen to a public radio station which plays all kinds of music from around the world, and lately in the car I've been listening to a "classic country" radio station.
9. In theory I like to walk and do yoga, but haven't done either very regularly (if at all) in almost 2 years, since Thomas was born.
10. I believe that being a parent is the most difficult thing I will ever do, but it is the thing that brings me the most joy in life. Nothing makes me sadder/angrier than parents who don't appreciate what they have.
Henry still seemed extra stimmy and needy and whiny this weekend, maybe still carryover from Thanksgiving.
Bill coaches a 5th grade girls basketball team, and they had practice Friday night at 5:30. When he has a practice like that, before I get home from work, he has been taking Henry with him. It's pretty cute because Henry just kind of hops and dances around at the edge of the gym. He's only there for 15 minutes or so of practice and then Tommy and I pick him up. Anyway, I've told you how Henry says "you miss me" a lot. Well all weekend he kept saying "I missed you while you were at basketball practice." (Like he wanted me to say that back to him- I missed him while he was at basketball practice.) I don't really get this, because he wasn't there that long. Maybe it makes him nervous when he's waiting for me to pick him up there, and he wants to confirm that I missed him???
Henry and I ran some errands Saturday afternoon. The trip started off well, but things slowly went downhill. I should have made these trips in reverse order but, as usual, I wasn't thinking far enough ahead.
Our first stop was the library- always Henry's favorite. Then we went to the grocery store, which was crowded and not-so-pleasant. In an effort to avoid some of the crowds, I inadvertently ducked down the TOY aisle! Ooops. Henry spotted a power ranger that he wanted, and I ended up buying it for him. Mostly because I didn't want him to throw a fit if I told him no, and didn't want to have to abandon the rest of our shopping. I know that this is Bad Parenting 101- giving in to your kid when he wants a toy at the store. But I rationalized with Bill later, and he seemed to agree-- Henry is not like most 6-year-olds. The things he usually asks for are fruit snacks or cereal because they have a Disney character on the box. He likes to go to the library every weekend- never asks to go to the toy store. And, as many of us have experienced with our ASD kids, he doesn't PLAY with many toys.
So, considering all those aspects, I thought it was ok to buy the power ranger. He spent a lot of time looking at the packaging, but he also seemed interested in the "guy" himself, so that makes me hopeful.
Then we went on to the craft store. I am not too crafty myself, but I get the bug at Christmastime. My daughter and I used to make ornaments or other gifts for family members when she was younger, and I am trying to continue the tradition with Henry, although it is more of a challenge. We have a big tub full of pine cones that he collected in the yard this fall and I thought that we could make them into ornaments. So, while at the craft store, Henry found a puzzle (go figure- it's like Henry's own paradise that every store has puzzles.) Again I indulged him and bought the $3 puzzle (Fantastic Four).
By now it was about 6 pm- we were both getting hungry and tired. But the most important stop was still ahead. Our toilet seat is cracked, and pinches one's bottom whenever one sits on it! So I needed to stop at Lowe's and get a new one. Lowe's holds ZERO interest for Henry, but he carried his new puzzle in with him. I asked if he wanted to ride in a cart (knowing he was tired), and he said "these carts are all messed up!" That seems to be his new way of dismissing an idea- saying the thing is "all messed up."
So we wandered all around Lowe's, with Henry getting more and more frustrated. He actually started saying "you don't like this place", "you want to get out of this place". It is really open and cavernous- I don't know if something about the store made him feel uncomfortable, or just the fact that they didn't have puzzles or power ranger stuff.
We finally got the seat and were walking to the checkout. I tried to carry him, but couldn't with the toilet seat under my other arm. When I put him down, he dropped his puzzle. I tried to pick it up, but he took it from me and threw it down on the ground, letting me know he was really fed up. He said "you want to leave it here." We were about 20 feet from the checkout and there weren't many people around, so I just left it there and kept an eye on it, figuring we'd go back and grab it.
Someone who worked at the store came over and picked it up and I could have sworn he took it over to the customer service desk. But, when we went over and asked about it, no one seemed to have any idea what I was talking about. So the puzzle is gone.
It's sort of ok, because I want him to learn the lesson that if he throws something down and says he doesn't want it anymore, it might really be gone. But all the way home and all the next morning we had to talk about the Fantastic Four puzzle. I think maybe Santa will bring him a new one.
In NT kid news, Tommy's language is growing so quickly- it really makes me see the things that Henry wasn't doing at that age (but I didn't really know any better at the time, and every kid is different...) Thomas is only 21 months old, and he is coming to me, holding out his finger, saying "mommy, hurt, me, block." And picking up Bill's hat, saying "daddy wear." He also climbs out of his crib effortlessly- that one I'm not so excited about!
OK, I am probably a bad mom to do this, but I have to post a couple funny pictures. I am in that pre-Christmas mode, where I have so much to do and I need to do it right now. So I got it in my head that I wanted to take the kids' Christmas card picture yesterday morning. I was obviously in total denial about Henry's REALLY BAD bedhead (he went to bed with wet hair). He desperately needs a haircut, but that's easier said than done with this kid. So here is one of the pictures I took:
What was I thinking? Like I'm going to send my friends and family this picture??!! Not to mention that Thomas has food on his face.
In my defense, I think I see my children through rose-colored mommy glasses. I often bring pictures in to work to show off and once I see them through someone else's eyes, I think, "oh, his face was really dirty there" or "gosh, they're only half-dressed in this one." But obviously at the time I thought my kids were being so darn cute that I needed to capture it in a photo.
A couple weeks ago Bill was going to take Tommy along to Henry's swimming lesson. So I got out the trunks and a swim diaper, which Thomas promptly put on his head. Then he put the trunks on over his pants. Why?!
I think both of these pictures will make me laugh for awhile...
(Here I am at Thanksgiving dinner with my Henry.)
Henry is quickly settling back to normal. I have been pleasantly surprised because his teacher has been sick this week, and I would think that upheaval at school would lead to some distress, but I haven't seen it at home. This morning he did say "you miss Ms. H so much!" He said it totally independently- we weren't even talking about her at all.
Today they took a field trip to the "big main library" downtown and were going to have lunch at Bob Evans. Henry has been looking forward to it for weeks-I'll be interested to hear how that went.
This morning we had a minor achievement, for me and for Henry. I was bustling around in the kitchen, trying to make him and Tommy their frozen waffles and link sausage breakfast. Tommy asked for more banana. Normally I would have run in to the table to get it for him. I don't know what possessed me, but I asked Henry if he could please get the rest of Tommy's banana for him. Henry didn't bat an eye or say one word, he just grabbed the banana and handed it to Tommy. I had to ask him to peel it- he didn't realize that Tommy doesn't know how to do that, but Henry did not protest once. Actually, he got a little upset once I started praising him for being such a great helper and big brother. Sometimes it seems like he gets a little embarrassed when you praise him.
This was a big step for Henry, but also for me. I often overlook the opportunity to challenge Henry, either because it's easier/quicker to just do it myself, or because I'm not sure if he'll react positively or negatively.
Last Wednesday I started writing a sappy post about all the things I'm thankful for. Thought I would finish it over the weekend. Well, unfortunately for anyone reading, my weekend was kind of crappy. So instead of the lovey, mushy post, you get to hear me whine. Maybe I'll finish the thankful post another day.
So Henry went home with my parents last Saturday (the 19th) and stayed with them until we arrived on Thanksgiving Day. Then we all stayed there for a couple more nights and came home on Saturday.
Henry is always "bad" after spending time with my parents. I know this. Why am I surprised every time? (I know "bad" is not a proper word to use, but it's sort of shorthand for "more autistic".) The same thing happened last year, that's what kills me, and I must have blocked it out of my memory until it was too late.
It's not my parents' fault- they do what all grandparents do, they dote on their grandson. He gets to stay at their house for a few days without his little brother bugging him, and watch movies and do puzzles and go shopping for Power Ranger stuff. The problem is that this indulgence kind of puts him into a ZONE where HE ONLY WANTS TO DO WHAT HE WANTS TO DO RIGHT NOW. No matter what you suggest, he'll say he doesn't want to do it. But he won't just say he doesn't want to do it, he'll scream. If you're lucky he'll use words, but more often it's just a scream.
He just really regressed from what I had been seeing in the past few weeks- using words, being nice to his brother, adapting to change. So while we're visiting with family for Thanksgiving Bill and I also have to be in crisis mode- taking turns trying to calm Henry down.
He screamed every time Tommy came near him, and here's a typical exchange:
I said it was time to eat the Thanksgiving feast.
He says (screams really) "you don't want to eat the Thanksgiving feast!" "The Thanksgiving feast is NOT ready!" "Everyone is NOT going to eat!" etc. etc.
I said, OK, he doesn't have to eat, but that's where we'll all be. So he follows me out, sits at the table, and then. . . he's sweet as could be. He keeps putting his head on my shoulder, saying "you missed me", "you like this thanksgiving feast", "it's fun to all be together for the thanksgiving feast", etc. etc.
The same thing happened with decorating mom's tree. I asked if he wanted to help. "You do NOT want to decorate the tree!" "You are too young to decorate the tree!" (Not sure where he learned that one.) Then he comes downstairs and dances around the tree while mom decorates it, sits on his uncle's lap by the fire and gushes about the tree.
I know a parent is supposed to stay one step ahead of one's kid. I feel like I am reasonably intelligent and can manage that with my other children. But I sometimes feel like I'm fighting a losing battle with trying to figure Henry out. What is the answer? Don't ever let him stay with my parents? That seems obvious, but I guess I want to keep trying and hope that he will learn to roll with changes a little bit better. I feel like they can all benefit from spending time together without Bill and I hovering around.
By Friday evening I wanted to get him out of the house and get his body moving a little. So I found out when mom's rec center had open swim and told him we would go swimming. That made him go berserk. I got frustrated and disappointed and told him "Henry, I thought you would like that and it would be fun. But if you don't want to go then we won't." He kind of looked at me like "why the hell would it be fun to go to a strange pool with you?"
Henry, I feel like I understand you so well, yet other times I totally miss the boat. I'll just keep trying.
Maybe I subconsciously knew this would be a stressful weekend and that's why I was feeling a little melancholy on Wednesday.
So next year, when I propose sending Henry there for the week before Thanksgiving, just do me a favor and remind me what will happen.
This picture is over a year old (from Henry's 5th birthday), but I was browsing through some photos yesterday and it caught my eye. I just love the expression on his face and the Disney story book and puzzles on the table. (Just ignore the big trash bag in the background. I know, you probably wouldn't have even noticed it in the first place...)
MOM-NOS got me thinking with this post. Thinking about language development and that even though our kids might follow a different path to learn to communicate, they get there and they do have something to say.
Although much of Henry's scripting comes from movies and books, much of it also comes from things we have said. He attempts to generalize statements, to varying degrees of success. I guess it was about 2 years ago now, at his first preschool, that Henry started saying "You feel sick." "You feel cold." "You feel tired." He often didn't feel any of those things, but I believe he just felt unhappy or something was wrong- he was trying to find the right words to tell us, and was using little phrases that we had given him: "Do you feel tired?" "Do you feel sick?"
Interestingly, he eventually dropped most of those other phrases, but has held on to "you miss your mommy." He says this a lot, all day long. He uses it appropriately, saying it when I'm not with him. Sometimes, when we are together, he says "you miss your--" and then stops, looks around to see who's not there and then says "you miss your daddy." I'm still not sure that he TRULY is missing us when he says these things, or if it's a kind of verbal stim or a way to get a little affection from whoever he's saying it to. I think he says it more when he's being asked to do something difficult. Probably wishes I was there to bail him out.
Or maybe he truly does always feel something's missing when one of his family members is away from him. That's a far cry from the old stereotype of the autistic child who is disconnected from the people around him! Oh, this can make me too sad if I think about it too much- my son misses me all day long!
His teacher called one day earlier this fall to tell me Henry was sick. She was pretty excited to tell me that he even used his words to tell her "I feel cold." I opened my mouth to explain to her that he often says that but doesn't really mean it. And then I realized that actually he hasn't used that phrase in quite a long time, and that maybe he was really using it correctly.
He had a fever that day and when I picked him up he was sleeping in a bean bag chair, wrapped in a blanket. He was cold.
Henry is at Grandma & Grandpa's house for a few days. They (my parents) live about an hour away- not close enough to see weekly, but close enough to see at least monthly, which is great. We had a football watching party to attend Saturday afternoon, so mom and dad agreed to come and babysit and then take a kid home with them. Good deal, eh?
Henry has stayed with them before, and of course he loves it- they indulge all his interests and he gets them all to himself- no sharing with the little brother.
So I told Henry a few days ahead of time that he would be going- I knew he would be excited, and also just wanted to prepare him. That may have been a mistake. Friday night he kept saying he wanted Grandma and Grandpa to come RIGHT NOW. Then he woke up Saturday morning and really started fixating on it- "They ARE here." (No, they won't be here for a couple more hours. Then they'll stay and watch football for awhile, THEN you get to go home with them.) It was a lot of waiting for the poor kid. Then every once in awhile he would get fed up and say "they ARE NOT coming to your house." It's really interesting when he does that, like he can't handle the excited feelings and just decides he doesn't want them to come after all, or he's just tired of waiting, so they missed their chance.
He also said a couple cute things about his glasses Saturday morning- he said "you want to throw them away" and "you want to take them back to the eye doctor." Both smart ideas, but sorry, you're stuck with them. He said those things but was pretty agreeable about leaving the glasses on. I guess he just thought he'd make a few suggestions and maybe I'd take him up on one of them.
When mom, dad and Henry pulled out of the driveway Saturday evening, he said "you miss your people."
It is hard not to eat him up, friends. He couldn't be any sweeter. (But I gotta say, it was nice to have one less kid this morning. I had time to drink some coffee.)
We picked up Henry's glasses last night- here he is wearing them this morning (and also sporting some bedhead.)
(We have a dinosaur digital camera that is a hand-me-down from my dad, and I seem to have messed up some of the settings, so this picture is not of super quality, but you get the idea.)
He keeps asking to take them off, but has been leaving them on when I tell him to.
I have a week's worth of things to say and will not be able to remember them all. I think I'm a little PDD myself (aren't we all?) because last week every day we were on a weird schedule and by the end of the week I was an emotional wreck. Sometimes I just want everything to stay in the straight line that I put it in and I want everyone to repeat the script that I expect them to repeat and not deviate from it. . . Wait, is PDD so wrong?
Thursday I had my parent-teacher conference with Henry's teacher. It went wonderfully, not that I really expected otherwise. But I think I have to pinch myself once in awhile to make sure this isn't a dream. Henry's pattern in the past has been to start off in a new school situation with flying colors, and then have an ugly regression after the initial "honeymoon" period. (After he has suckered all the teachers into thinking he's so sweet and innocent...)
(Knock on wood) that has not happened this year. However, his teacher had written me a couple notes in the past week that he had had a "rough" day, was "extremely resistant" to his speech therapist or that he scratched another child, and that gave me the sinking "here we go again" feeling. Ms. H told me that she is not concerned about the few bad days that he has had, and she really put my mind at ease.
You know what really thrills me about kindergarten? The art projects that Henry brings home. In past situations it was always left up to him whether he wanted to participate in the craft activities, and he always opted not to. But now he's not allowed to choose not to do the craft- and he seems really proud of everything he does.
We had a really long weekend- Henry and I had the day off Friday for Veterans' Day and Tommy's sitter needed to take Monday off for medical reasons. So I got to spend some extra time with each boy! Also, I took both of them to the park on Sunday and that was fun. The unsuccessful trips are always the ones that stick out in my mind- I need to make a point of remembering the successful ones. We played on the playground and walked in the woods to "throw sticks in the creek" at Henry's request. He picked up a "stick" that was actually a branch and was probably 9 feet long!! He dragged it along the path and down a long series of wooden steps to the water's edge, then dropped it over the rail into the mud- didn't even throw it far enough to land in the water! But Henry didn't care, he was having a ball. It is fun to watch him play on the playground too- he is gaining a lot of confidence in climbing.
We were in the van Friday and Henry was looking at a toy catalog. He loves to look at catalogs, but wouldn't actually play with most of these toys if he had them in front of him- just likes to admire their photos. Anyway, he says in a scary kind of voice "I am Darth Vader!" (Yes, even using the correct pronoun.) And asks me what this toy is called. I was SO EXCITED (being a former Star Wars fan myself). I'm thinking "pretend play! I'll get him the Star Wars ultimate light saber for Christmas and we'll play sword fights! What a breakthrough! I didn't even think he knew who Darth Vader was!" Etc. etc.
Then, a few hours later we're watching Toon Disney and I see a commercial for the ultimate light saber toy in which the child says, you guessed it, "I am Darth Vader." He was just scripting a commercial. Sigh.
A doctor in this area has arranged for special screenings of new movies at a local theater for special needs kids and their families. The sound isn't quite as loud and the lights aren't quite as dim as in a regular showing, and no one minds if your kid runs up and down the aisles or talks loudly, etc. Saturday they were showing Chicken Little.
Now, on Saturdays we usually go to the library. And, like so many things with autistic kids, the more times we do it on a Saturday, the more Henry thinks that's ALWAYS WHAT YOU HAVE TO DO ON A SATURDAY. So, Saturday morning, when I asked if he would like to go see Chicken Little, he said "you want to get that movie from the library." I replied that it wasn't available at the library yet- you can only see it in the movie theater, and he got all agitated and said "you don't want to see it in the movie theater! You want to go to the library." OK, so I thought that was the end of that. Then, about 2 hours later and around the time we would have needed to leave, he comes over out of the blue and says "you want to see Chicken Little in the movie theater." I guess he had to warm up to the idea for awhile before he would agree to it. So we hustled around and got dressed and ran out the door and headed to the movie.
We went to one of these (Shrek 2) about a year ago and left after the previews and credits. But this trip was much more successful, and we stayed for the whole thing.
Henry was really a lot better behaved than many of the kids, but he did shout out inappropriately a couple times, at exciting moments, so it was nice to be in an environment that was friendly to such behavior. We stood up in the aisle at the end and danced together and that is going to be one of my favorite memories for awhile!
We also went to the library later that day (of course), but we were lazy and drove instead of walking.
Sunday Henry seemed really agitated and was being really difficult with regard to his little brother. He doesn't physically hurt him or anything, but he shouts at Tommy whenever Tommy comes near anything of Henry's, and refuses to share, etc. I mentioned this to Henry's teacher yesterday and she is going to help me come up with some tools to use at home to help with his behavior. She said she'd be happy to write a social story for us. At school Henry has a social story about "using gentle hands with his friends" because he often scratches or pinches. If he uses gentle hands all day, his name stays on the smiley face. If his name stays on the smiley face all day, he gets to pick a reward from the reward box. I have resisted these kinds of reinforcers at home, frankly because it sounds like a lot of work and structure that it might be difficult to follow on the weekends, etc. But it may help on the "bad" days when we find ourselves constantly saying "you need to be nice to your brother."
It breaks my heart because Tommy is going through such a sweet phase right now: he is always picking up one of Henry's books or toys and bringing it to him, saying "book, bubba." On a good day Henry says "thanks Tommy" and takes it from him nicely. But on a bad day he screams and tears it out of Tommy's hands, or else pushes it away. Tommy has also recently started saying "sorry" without any prompting. He'll bump my arm and then throw his arms around me and say "sorry mommy, sorry." So I don't want Tommy to "unlearn" these good habits he's learning because his brother has still not learned them.
Yesterday Henry's class had a "fall party". We made some crafts involving pumpkins and turkeys, ate apples and cookies,etc. I was blown away when Henry sat down and made a hand print turkey- he didn't flinch when we painted his hand, and in the past those kinds of sensory things would really flip him out. It was fun to go and see his classroom. I really have to hand it to his teachers- there are only 5 kids in the class, but their ability levels are SO different. It must be such a challenge to balance 5 different class plans! One child with very good verbal skills came over to me and said "are you Henry's mom? What's your name?" And answered some questions that I asked him. But there were a couple children that I didn't hear speak at all, and one little girl kept trying to eat things that she shouldn't... Those teachers are very special people! We are definitely thankful for them this season!
Well, I opened this can of worms and the more I try to write about it, the more I feel like I am failing miserably!
I'm starting to think that the right thing for me to say is- because of Henry's disabilities, I am more aware and appreciative of Tommy's abilities. And vice versa- each one makes me appreciate the other. My life would be beautiful with only either one of my children, but with both of them...
My husband will tell you that I have a lot of "internal dialogues" where I debate my feelings and waffle back and forth a lot. So I think every time I catch myself saying "it's so fun to see Tommy pretending his stuffed bunny is reading a book. Henry never did something like that" I feel GUILTY. Guilty for comparing them.
But because Henry was my first child, this is all really fun for me- I didn't see typical development happen, and it's pretty cool. (Tommy actually did that pretending with the bunny today and I took his picture like a big geek.)
And we know that there will be a day when we wish Tommy was more like his big brother. Like the first time he asks to have a big birthday party at Chuck E. Cheese. We'll say "Henry never cared about having a birthday party. Why does this one have to be so high maintenance?" :-)
"I thank God that I have him. I often wonder what it would be like if Andrew was our only child. I am sure it would be fine because we wouldn't know any better, but having a kid like Brian with his amazing imagination really keeps our life fun."-my2sons
I have been thinking about this subject a lot- unlike many of you out in "blog land", we chose to have another child after having one with an ASD. (Although Henry wasn't technically diagnosed at the time we got pregnant, he was clearly delayed and was receiving services for those delays.)
My family seems a little different in that our ASD kid is the middle child (or the oldest, depending how you look at it). Our family, as many these days, is complicated. Our oldest child is actually my step-daughter. She lives with us full time and I definitely view her totally as "my child," but she started living with us full-time when she was in first grade, so I have not had the day-to-day mom and only mom experience with her (step-parenting could be the subject for another blog!)
So, Henry is MY first child- the first one that I carried around in my abdomen for 40 thrilling weeks and visited in the hospital after he was born (a subject for another post), attempted to breastfeed, took to so many doctor appointments... I sat in the waiting room and cried on my husband's shoulder when he got tubes in his ears and his adenoids removed. I cried with pride and happiness when I realized on his third birthday that he knew all his letters and numbers. And I beam with delight when he tells me that he had a good day at school or that he loves me. Almost every day of his life I have told him that he makes me happy.
The thing that I want to get my head around here, and find a good way of saying, is how I feel about our youngest child. If I say that he brings me so much joy because he is "normal/typical", does that insinuate that Henry doesn't bring me joy? If I say that each milestone he reaches effortlessly makes my heart skip, does that translate into "all Henry's milestones have been such a struggle"? If I say (to quote Brian and Andrew's mom) that Thomas "keeps our life fun", does that mean we don't have fun with Henry?
Am I over-analyzing this? Probably. But I want to figure out the right way to articulate it- so please help me! Those of you with more than one child, how do you think about the differences in your children? Can I celebrate Tommy's "normalness" without condemning Henry's difference?
I don't have pictures from Halloween yet, but I do have a funny story I want to write down before I forget. Henry had his best trick-or-treat night ever! He went up to most of the houses on his own, saying "trickortreatthankyouHAPPYHALLOWEEN" all run together like that. We kept trying to explain that you say "trick or treat" first, then get the candy, then say thank you and happy Halloween. But I guess it was enough that he was saying the proper words, and not getting frustrated or scared.
So the funny thing is-- I was laughing a lot, I guess because I was excited/nervous/apprehensive and then thrilled that the whole thing seemed to be going so well. Making a little conversation at each house, exclaiming about other children's costumes, etc. Finally Henry says, in this really low voice- like a stage whisper or something, "you want me to stop laughing" (translated: I want you to stop laughing).
I was embarrassing him! Or irritating him, or both. He's 6 years old and has PDD and is still embarrassed by his mom!
Henry loves puzzles, and he is very good at them. He started out doing the 25-piece puzzles when he was around 4. He became so proficient at them that he would sit and do 10 25-piece puzzles in half an hour, and they'd be arrayed all over the floor. So we started trying to find more difficult ones. Even the 100-piece puzzles (like the one shown above) don't present too much of a challenge.
Then, last year around Christmastime, something miraculous happened. And I am not being sarcastic here- this was truly a blessing to us. I work in a university office, and we employ some part-time students. I was telling one of them about Henry and his interests, and she said, "oh, my sister and I had all these Disney movie poster puzzles when we were kids. My mom still has them- I'll bring them in for Henry." These puzzles are 500 pieces and are the size of a movie poster (3x5), but the pieces are oversized. We have Aladdin, Beauty and the Beast, The Jungle Book, 101 Dalmations, The Little Mermaid, Snow White and The Lion King (I bought that one on e-bay- that is the only place I've found them.)
I can't tell you how excited I have been about these puzzles!!!! They provide an activity that we can do WITH Henry- they are difficult enough that he wants help with them and we can talk, listen to music, etc. while we work together on them. (And, they feature one of his other passions, Disney characters.) They have provided an opportunity to encourage him to work together with someone- usually an adult, but he also allows the occasional cousin or (when he's in a REALLY good mood) his little brother to work with him.
When I first noticed the autism awareness logo that has a puzzle motif, I kind of got a kick out of it- because Henry loves puzzles, and his behavior can be puzzling to us also.
But I never questioned, until just recently- why does he like puzzles so much? It must be because they are an exercise in creating order out of disorder. They always have a predictable outcome. They allow him to feel in control. And, the activity gives him some positive reinforcement- he always receives a lot of praise for his puzzle skills.
The action I've captured in this picture is Henry's really excited "flapping" (I'm not really sure what to call it.) He kind of hums and hops and flaps his hands when he's excited or happy, and when he's sitting down, he does the same things with his legs!! Sit down and try it- it's pretty hard to do! I should try to do it whenever he does- it would be a good workout!
I'm looking forward to reading about everyone's Halloween...
Well, Henry didn't let me go for long without a story to tell. But first, a few basics to help you understand him:-Like many autistic children, Henry has trouble getting his pronouns right. The easiest way for me to explain it is that he says what he wants YOU to say- he wants you to repeat it. For example, he'll say "you need a potty break"- really this means that he needs to go potty. But our way of asking him when he was little was "do you need a potty break?" So, in Henry speak, "you" usually means "I" and vice-versa.-One of Henry's passions is anything Disney. He has moved from one favorite movie to the next (The Lion King, Aladdin, Beauty and the Beast...) but he also loves to admire an assortment of Disney things- spread all the video boxes out on the floor, pore over one of those ads you get in the mail for a movie club, collect fruit snack boxes featuring different characters...So, yesterday afternoon we took his big sister to an appointment at a branch of our Children's Hospital. Henry has a very optimistic outlook on life and views every new place as potentially holding new Disney movies, books, or puzzles (another passion). He quickly looked through all the books in the waiting room, but they mostly seemed to be old textbooks or children's encyclopedias! Then, he spotted shelves of movies behind the receptionists' desk, and made a bee-line for those. (They show movies in the waiting room, but the one showing at the time was Jumanji or something that he had no interest in.)So, I had to carry him kicking and screaming out of the receptionists' area. (They subsequently shut the door.) I tried in vain to interest him in anything else, but he could not be swayed. I told him that only "people who work here" can go in that room. So he started saying, in such a choked, pitiful voice, "you want to work here, you want to work here, you want to work here, you want to work here."So then I said (why was I trying to reason with him?) "you're not old enough to work here" or something to that effect. He got even more agitated and said "you are NOT too big." Trying to contradict my statement, but getting it a little backwards. Then he said, (and this really threw me) "you want to go with Tommy." His little brother was at his babysitter's (Lori), and at first I thought Henry was just totally changing the subject and saying he wished he was at Lori's house! But then he elaborated: "you want to go in that room with Tommy. He is not too big."He had misunderstood what I said- that he was too big to go in that room, and figured if he went in with his little brother, that would be allowed!!These sorts of conversations leave me with mixed emotions- I am always so proud when he tries to "use his words", and impressed with the (sometimes circuitous) connections he makes with things. But it makes me so sad that he has so much trouble understanding these kinds of rules in life- there are areas where only employees can go.I ended up carrying him back out to the minivan where we listened to a story tape and hung out for about 45 minutes.Last night he did something I was really proud of: he told his little brother "thank you" 2 different times, without us even having time to prompt him.
This picture is misleading because they don't usually enjoy being this close to one another. (They were sitting on my back- horsey-style.) But that's a topic for another day.
Well, this is intimidating, isn't it? A whole site of my own to fill. Lately I have found myself starting to comment on one of my favorite blogs, but then writing paragraph after paragraph and realizing that this was a bit more than a "comment" and deleting it.I love this blog community that I've found over the past few months. It is a strange cyber-support group where we can tell the sordid details of our lives on the autism spectrum, and know that the others really "get it". Where a mom can brag that her child pretended to be something, and we all understand why that's a big deal- no further explanation required.I've gasped countless times when recognizing something in someone else's child that I see in my own. What a great feeling after all these years- someone else's kid does the same thing! (Charlie's backwards hug is the first example that comes to my mind.)I guess I'll give a little background on my family. I have three children: a teenage daughter (maybe I'll check with her first to see if she minds if I use her name here), 6-year-old son, Henry, who was diagnosed PDD in February 2005, and a 20-month-old (NT) son, Thomas. My husband and I both work outside of the home, and our life is pretty busy. Things with Henry have actually seemed a bit easier since we got his diagnosis, a name for "what is wrong with him" and some direction in how to deal with it, at home and at school. It is easier to be able to say "my son has autism"- a shorthand way to explain what's up with Henry's behavior, than to just wonder if we had done something wrong and our child was horribly ill-behaved.Ironic, though, to think how far I've come since Henry was 2 1/2 and a family friend broached the subject of autism with me. I cried for days. Who would have thought then that I would welcome this diagnosis, 3 years later?I look forward to exploring these issues and many more on this blog. Thanks to anyone who reads, and thanks in advance for the support that I know I'll be needing...
