Note to self: do something differently next year

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.

Your people miss you too

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.)

Glasses!!!!!

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.

some random thoughts about the week

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 good day, a bad day, and a party

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!

siblings, continued

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?" :-)

siblings

"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?

zip it mommy

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!

puzzling

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...

you want to work here

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.

my boys

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.

first post

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...