Do you hear me sighing?

*sigh* What was I thinking? This always seems to happen, just when I let myself get too comfortable......

When I was taking AP English class in high school, our teacher told us something that I have always remembered, and it comes to mind tonight: She was about the same age as our mothers were at that time, and used to talk to us, advise us, etc like a mother would, in some ways. Most of us were new drivers, and she gave us advice about driving.....saying that when you start getting too confident, too comfortable at your driving, that's when you need to watch out because you'll end up in an accident. Always have to keep your guard up, don't get complacent, or face the consequences, basically.

I guess I didn't learn the lesson from Mrs. Fowler, or at least not when it comes to being an autism-spectrum parent. Instead, I keep making the same stupid mistake over and over and over again. :( People that know me or have read this blog for a while should roll their eyes at this, because it's the same old crap you've heard before. You'd think I'd learn.

So, every time Mr. L gets in a new situation, I set myself up for disappointment. Because he's doing so well, I stupidly think he can "pass" for being a typical kid..........pass as "non autistic" and that we can get by without telling people like Sunday school teachers, sports coaches, etc. I just want to blend in, is that so crazy? Just to be the regular old parent with good, rock-solid regular kids, not the one who's hanging on by a thread the way I am and whose next meltdown could be as near as the next pitch of a baseball.

Saturday was as prime an example of my idiocy as you could hope for. Living in a crazy-house dream world, I somehow thought that because last week's baseball game went so well, we could have hope for a mostly autism-free season this year, unlike the last two years. Yeah, right. Who am I kidding? Obviously, only myself, and today proves it. We played the toughest team in the league, knew we'd lose, but didn't know how Mr. L would completely meltdown when he got thrown out at first base and ended up 0 for 2 on the day.

Not sure if I can remember the last time he melted down this severely. It was horrid, he was not just crying, not just sobbing, but loudly moaning in a repetitive rhythm like "AAAH, AAAH, AAAH, AAAH, AAAH, AAAH........" and I'd say that went on for maybe 15 minutes. He was balling up his fists and hitting anything in sight, including his dad and the car doors, inside and out. Refused to go back out into the field with his team to finish the game, refused to go out for the post-game high fives with the other team. And the more anyone tried to help him, the worse it got.

One of the worst parts for me, though, is the sympathy and pity of others. And how do I explain why he's doing this? Another mom from the team latched on to me and tried valiantly to help.....gathering up my stuff so we could leave, trying to talk to him and help convince him how well he'd done, gave me a hug, even told me "God gave him to you for a reason". But as soon as she started asking to help and doing things for me, the water works opened and I started crying myself.

Now, looking back, I'm a mixture of sad and angry. Not angry at him, but at myself for the stupidity of it all. Was it stupid to even try to do coach pitch baseball? He's never dealt with "outs" before, never had winners and losers, etc. Last week was nice, when they won, but we know there will also be some losses and if they are anything like today, I know I just cannot take it emotionally. And angry about the pathetic part of me that just wants to blend in with the other parents, maybe make some new friends who don't (yet) see the big multi-colored puzzle-piece-shaped A on my chest. But again, who am I kidding? Most kids go through upsetting situations, like losing a game, etc, and they might be upset, but they learn from that. They grow over time, they mature, they learn how to cope with it and it's not so tough after a while. ASD kids.....I'm not so sure. He lives so "in the moment" much of the time, and even as good as he's gotten at talking the talk of "it's ok if we lose", when it happens, you see the result and it is most definitely NOT ok.

The sighs are still echoing over the Atlantic, even now, and this happened 48 hours ago. Sighs tinged with tears, and with frustration, and loss, and embarrassment too, as much as it pains me to say that. When a parent asked me "is there anything I can do?" while Mr. L screamed and sobbed in my arms, I just shook my head no and cried right along with him. Just closed my eyes and tried to shut out the world, to not notice the people looking at us (or trying hard NOT to look) and the way in which the team and parents quickly dispersed and got out of there....no hanging around after the game, no chatting, etc.

I guess there's not much else to say. We're gonna plod right on with the baseball season, hoping with every cell in my body that he gets on base next Saturday so that we can avoid a repeat of the meltdown that came last time. And knowing that no one out there on that field understands, no one realizes what we go through and what it takes for Mr. L and our whole family to get out there every time.....working harder than anyone else just to keep up, just to look "normal" and even to come close to a typical baseball experience. And feeling like a faker the whole time too.

Gymnastics

A great friend of mine (who I met first in cyberspace, then in person) gave me some wonderful food for thought this week. She also has a son on the autism spectrum, and always seems to have such wonderful and "deep" insights into the ASD world and our place in it.

I was whining on our ASD forum (what else is new, right?) about the strange place I find myself in as a parent of an ASD child who would be described in the lingo as "high functioning". And in her wonderful way, my friend looked at my situation and put it into perspective, in a way I'd never considered. Really, never. I live with my role as A's advocate, protector, champion, therapist and psychologist 24/7, yet until yesterday I'd never really looked at us in this way.

It's like an Olympic-caliber gymnastics competition, specifically the balance beam. My sister was big into gymnastics when we were young, and she and I have always enjoyed watching the gymnasts on TV, etc. My favorite event is uneven bars, but I digress.

So, imagine with me, if you will: A, and our family by extension, is walking on a balance beam. (did you know that it's only 4 inches wide? oops, there I go again) On the right side of the beam is the NT world, the "real" world. It's so close that we can touch it. We don't actually walk in it, but we skirt along the edge and if we lean over just enough, we can sorta kinda feel like we're in it. We can blend in, merge into the traffic of regular life and pedal like crazy to keep up.

On the left side of the beam is the ASD world. The world of ABA therapy, advocacy, RDI, 1:1, IEPs, classroom aides, special diets, and a daily life of valiant struggles and hard-won progress. We don't really walk in this world either, truth be told. A's in a regular classroom, no aides. We don't do ABA, or RDI, or floortime or VB or anything like that. No special diets, no medications, no delayed vaccine schedule, nothing. He gets speech at school, and we do a social skills group once a week, and that's it.

So, I whine. I whine because I feel like we're walking on this tiny, narrow beam and we don't belong to either of the worlds that surround us. And that means I don't belong either. Not to the oh-so-cool Moms that I see at the park, the soccer games, and church.....my life's not like theirs. And not to the brave, dedicated ASD moms I meet in person and online either. It's almost unfathomable to me what these ladies do on a daily basis, and I don't know that I could be as strong as they are, or keep pressing on if my child was non verbal, or violent/self-injurious, etc.

Bless you, dear friend and fellow Obamamaniac. You know who you are. I guess it takes someone who looks at your life from the outside to truly see it sometimes, to give that rational perspective that you may lack. What was this amazing revelation that she gave me? Well, in a nutshell, it was this: She gave us credit. Credit for the tough hand we've been dealt. Anybody who has a child on the spectrum has it tough, no question there. But when I start thinking that I've got no right to complain about A's struggles, MY struggles, now I can remember her words, like this:

"A has some pretty sophisticated expectations placed on him, because he is so very high functioning. In many ways, your life, navigating him through the NT world, is probably much more stressful than mine - because my son is always so insulated and protected from NT expectations. A has so many more expectations on him than my son does, so I totally understand your frustrations about him, even though I don't have a similar child."

perfectionism

No, not me, although being a perfectionist is something I've been accused of more than once (or twice). This is Big A, and it's worrying me. The Aspie in him won't accept failure, won't even accept making mistakes or "getting something wrong". I submit, for your review, Exhibit A which took place this afternoon:

A sweet friend of ours turned us on last year to a great geography website, Sheppard Software. A loves learning about US states, doing state puzzles, playing states games, etc. Today, he decided to start trying some of the harder games on the site that he'd never tried before. It was unfathomable to him that maybe some of these games were ridiculously hard for just about anyone to do, much less a 6 year old, so he insisted on trying.

The first game went like this (I kid you not)--You get a blank map of the US. No outlines of state borders, nothing. Then you see a star at some random point on the map. Along with the star is a text box, and you have to type in the first 3 letters of the name of the state where the star would be located. I helped a very minimal amount. He was doing it approx. 90% on his own, and doing great for the first 10 states. Got them all, including Arizona, Maryland (which I would have missed), Mississippi, Wyoming, etc. Then came a star in what I knew was Upstate NY.

He said "I think it's Vermont" and wouldn't listen to my gentle hints otherwise. "I don't think so, buddy" but he insisted, typed in the letters and pressed Enter. If you get one wrong, the state appears and is colored in red. Up pops a red NY. I swear, you would have thought the world was ending, or someone just killed his dog or something (if we had one).

When he gets like this, it's a bit scary because he just collapses onto or off of whatever is near him..........falls out of a chair, collapses onto the bed, slings himself backward against the back of a chair, etc. No concern for how hard he does it, or whether he or someone else gets hurt. And the crying.....or should I say wailing. The more you try to console him, the worse he gets. I pointed out that we'd gotten 11 right in a row, and that it was fine to just keep playing. No dice. I told him that no other 6 year olds I knew would be able to do this game AT ALL, and look how good he was doing! Nada.

I told him it wasn't worth it to play these games if it's going to upset him this much, so let's not play it, and I got a screamed "I will never play these games AGAIN!" Like I've said, there's no middle ground with him, it's all or nothing, black or white. But immediately, he just closes that game and starts up a new round of the same game.......but gets one wrong within the first 2 states this time. Wailing begins anew. Then he frantically clicked out of that game, and found another one. Nope, got the first one wrong on there. :(

K came in to see what was going on. Then, when he was up to speed, he scrolled to the parts of the site A has done before, successfully. A didn't bite......he just fussed about having done those games a million times and they are too easy, not challenging. K tried again, with another game. Again, too easy. At this point, nothing would satisfy him. Eventually, I had to completely change gears with him by letting him watch TV for consolation. He said "I think I'll watch the Food Network instead of play computer". If that calms him down, so be it. Personally, I can't stand that Giada chick, but he likes her, so I guess it's ok.

Just a couple of hours later, we got a sweet email from next year's teacher. I'd written to her, gave her the briefest outline of the ASD diagnosis, etc, and asked to meet with her later in the summer for an info/strategy session. She sounds wonderful, very sweet, energetic, open, etc. But you know what? Each passing year in school brings more "real" work, more assignments that are really graded, then you start getting A,B,C grades, then it's standardized tests, you get the idea. I'm just praying that this sweet young lady has the patience of a saint, the insights and sensitivity of a Mom and the creativity of a......well, of a good teacher. She's going to need it if she wants to avoid daily meltdowns like the one I witnessed today. Somehow, some way, we've got to break this "I must be perfect, the world is crashing down if one tiny thing goes wrong" mentality. :( :( :(

struggling in uncharted waters

As I travel down my given road as a Mom to a child with Asperger's syndrome, I'm constantly learning, constantly trying to observe.......like teachers would say, "monitor and adjust". I find, through talking to other moms of kids on the spectrum, that every child is affected so differently. Therefore, the moms are affected very differently as well, in some ways. There's certainly no guidebook on "How to Handle Your ASD Child", that's for sure. If you find one, buy it for me and I'll pay you back, ok?

I wish almost daily that somehow I could just open up Big A's brain and look inside. But if I did that, I'd also need to somehow understand what I was seeing, and be able to think and feel things the way he does in order to truly know where he's coming from. Since surgery has not yet progressed to that point, obviously (LOL), I make do with a precarious balance of 1) trying to parent the way most "regular" moms would and 2) trying to be insightful and respectful of how he must feel and the ways in which he needs to be treated differently. Saying that it's rough sometimes is the understatement of the year.

This morning, we had one of those rough patches. Tball has been, for A, such a success and good experience so far this season (little E is a different story for another day.......). But this morning, something happened which I really, really hope will not spoil the rest of the season for him. With 2 children on the team, I obviously can't watch both of them at every moment. DH and I happened to both be looking at E when we suddenly noticed A and the coach walking toward the bench from the outfield, and A was crying. The coach was saying, "he's ok, there's no blood" so we ran over to find out what happened. A was able to tell us that his teeth hurt, and that he'd run into a girl on the team as they both went for a ground ball. He was crying pretty hard, in his usual frantic, hyperventilating sort of way. A seemed so worried about his teeth, saying they really hurt, but I checked and they were not loose or out of place at all. We went to an unused Tball field nearby, and hugged and talked to him, trying to calm him down.

The problem is this: he gets so very upset, and is virtually unable to calm himself down. He enjoys Tball, and I know he wants to play, but he got so scared by this incident that he just couldn't shake it. With a typical kid, you might use the "shake it off, you're ok" approach and hurry them back out there to the field. I know that NT kids sometimes take their cues from how Mom reacts.....if they see you upset or worried, they follow suit, and vice versa. But A is too cerebral, too sensitive, too "deep". I don't know how to describe it, but those tactics just don't work with him.

I tried a rational argument approach, explaining how what happened was just a freak accident and wouldn't happen again so he did not need to be afraid to get back out there. Nada, just started him crying even more. I tried the old analogy about "get back up on that horse", but again, he just cried harder. I know that, no matter how I try, I literally cannot understand what he thinks and how he feels. And I try desperately to never belittle his feelings, but to respect them and allow him the time and space to do what he needs to do. He was just very, very scared of it happening again if he went back out there to play again.

But this is the world of American sports culture, obviously, and he's on a team of 90% boys and he's the biggest and oldest one of them. I'm sure it does wonders for his social standing among them when he goes into hysterical, fearful crying over something that most of them think is "nothing". The feelings and the fears are very real to him, I at least understand that much. But it seemed like no matter what approach I took, it made things worse. The only thing that helped was just letting him lay down on some unused bleachers and cry until he was ready to stop.

Hugging him and sitting him in my lap for cuddling.....nope, he arched his back and cried more. And he's so big and strong, I was afraid I'd drop him. Using the "your team needs you, you're a good helper because you're the oldest, etc" tactic went nowhere.....he just pointed out who else on the team is 6 and could be that helper. And the coaches seem baffled and perplexed too, and I don't know what to do about it. This isn't the first time he's had a meltdown in Tball this year, this was just the worst one. When it happens, the coaches (who are nice people, don't get me wrong) seem so taken aback by it, like they don't know how to react. They'll just come over to us and ask if he's ok, try to either tell him "you're ok buddy" or joke around with him, neither of which works. I'll say something vague and stupid like "he just gets upset easily" or whatever, but I think we're going to need a better explanation, effective NOW. Wish I had the coaches' email address, because discussing the ASD with them in person won't be fun. Plus, I always fear about unintended repercussions that might come after I tell....you never know who might feel like he doesn't belong on this team or in this league, or want to treat him differently in ways that neither he nor I wants. But you know they've got to be thinking "WTF is going on with this big 6 year old boy and the crying?"

This whole post has been one big disjointed ramble, and I'm sorry if it made no sense. Thanks for staying with me, if you made it this far. Lord, I just wish I knew the right way to react to A when he gets this upset. I worry that if I let him just sit out the remainder of the game, which is what we did today, then he's missing out on the lesson of getting back up on that horse, bouncing back after a stumble, etc. But there's always that wall, for lack of a better word, between his true feelings and true motivations and my understanding of them (or lack). I want to validate him, allow him to self-soothe, and I'll just have to hope I've made the right choice. Now, let's just hope that Thursday night's Tball practice goes better, or that he's even willing to get back out there ever again.

Baby, I'm amazed

Andrew is just so smart sometimes that it's scary. But it's not just "smart" in the traditional sense, even though he is..........it's the things he notices, things he remembers and thinks of, even days/weeks/years after the fact. He still manages to surprise me, though, even after all this time.

For several months now, he's been in a phase of posting signs all over the house, for various reasons. Some have been politically oriented (he's a Hillary fan, sadly), or lists of favorite things (foods, colors), or holiday greetings (we've still got Happy Easter in the living room, and I took down Merry Christmas not too long ago).

But a couple of weeks ago, he came home from school one day obsessed with the idea of making our own, in-home, art museum. I didn't really understand what he meant or envisioned---then he got out the sign-making paper. Next thing I know, I saw this:


...which was hanging on the hallway wall near his room.

The home art museum was to have a Masterpiece Exhibit (gotta love his 1st grade spelling!), a Sculpture Exhibit and a Pointillism Exhibit (he spells it "pointalisam"). Later that night, he made "sculptures" out of playdoh, and he and I drew some fair examples of pointillism. The masterpiece exhibits are TBA at this point. I asked him where he'd learned about this stuff, especially pointillism......was it in art class at school? (he goes to an arts-infused school, so it's not out of the realm of possibility) But he said he'd learned those words on the Jump Start Artist CD-rom computer game that we gave him. How many 6 year olds do you think are talking about pointillism and explaining what it is to their mom? (his version: it's a picture made out of tiny, tiny dots. Pretty good explanation, huh?) But these huge words and "out there" concepts just seem to soak into him........he retains them and then they pop back out when you least expect it. If you ask him who he sat with at lunch today, however, you'll probably hear "I don't know". That's what is so freakin' frustrating about the autism spectrum. Well, it's ONE of the frustrating things.

Where do we fit in?

You hear so much in the news nowadays about autism. Celebrities are speaking out, charities being formed and raising money, books being written.........the awareness of "autism" is much more prevalent than even just a few years ago. But along with that, comes a much higher incidence rate of autism itself, and of the so-called "autism spectrum disorders" (ASD). Recently, the "1 in 150" statistic has been highly publicized, and it occurs even MORE frequently in boys, for some reason.

But even with the deluge of publicity on the topic, it's taken me quite a while to accept the fact that my son is on the spectrum. But he is. Or is he? Just about every day, I struggle with this. First, his tentative diagnosis was PDD-NOS, which is like a pile of leftovers for the kids who don't officially meet the criteria for "classic autism" or other recognized ASD. As I understood it, PDD-NOS is for those kids who have some developmental issues and autistic symptoms or "tendencies", and there's no real label to put on them, so they get "pervasive developmental disorder-not otherwise specified". How's that for a mouthful?

But, Andrew was a preemie too, a 29-weeker. And most preemies have developmental delays, specifically in the areas of motor skills and/or speech. And true to form, Andrew was delayed, both in learning to walk and in the development of his language. He said a word or two, then stopped, and said no more for a while. He didn't acquire baby's favorite word, "no", until he was 2 1/2.

So when we started the diagnosis process, evaluators said "he sure looks a lot like Asperger's Syndrome" but the strict definition of Asperger's says that a child must NOT have had a speech delay. And as time has progressed, I've thought back to those comments and come to the almost-conclusion that Asperger's is a more accurate description of Andrew. But in some ways, even Asperger's doesn't quite fit.

Andrew is smart, very smart. Academically, he does very well at school and reads above grade level. He's made such tremendous progress over the last 2-3 years, and the progress even extends into the social realm, where ASD kids typically have the most trouble. He can play with other kids, speaks to them, looks at them, enjoys their company. He's even started to say some typical-6-year-old things, like "this is boring" or "I'm tired of this", and occasionally has a bit of an "attitude", all of which are typical of non-ASD kids his age, right?

I have wonderful cyber-friends in the ASD world, and I owe so much to those ladies for their support and encouragement. But since every child with ASD is so different, I still sometimes feel like we don't really belong anywhere. I want and need to have a community of people to belong to, and to understand what we deal with and what my parenting situation is like.......I'm just not sure how to find it. I never want to make any other parent feel bad, if her child might be struggling more than mine or has more disabilities, etc. But it's just hard, feeling like we are neither off nor on the spectrum.............and since you can't pick and choose the characteristics that apply, we're left floating out there, knowing that Andrew still has difficulties to work on, but not always knowing how to go about it. There's definitely no road map.

My Mother's Day azalea is blooming

Hi! Welcome to my brand-new blog. I figured it was time to enter the new century, right? I hope that this blog will be a good way to share my thoughts, ramblings and the ups-and-downs of daily life. Thanks for coming along for the ride!

I'm a thirty-something Mom of 2 boys, and both were born very prematurely because I suffered from severe preeclampsia in both pregnancies. My oldest son, Andrew, has a diagnosis of Asperger's Syndrome (on the autism spectrum) and my youngest, Ethan, is barreling towards a diagnosis of ADHD.....emphasis on the "H" part.

Almost 3 years ago, my husband gave me an unconventional Mother's Day present: an azalea plant. We live in South Carolina, specifically right outside of a town called Summerville--basically, the world capital of azaleas. I'm well known for my black thumb, which kills every plant I come in contact with. But I figured I'd try to keep this little azalea alive for as long as I could.

I kept it in the original flowerpot for a while, then it started wilting. I planted it at the left-front corner of our house, and made a little decorative brick border around it, then waited. It struggled mightily for a while, but it seemed that whatever I did was wrong. I watered it too much; I didn't water enough. It turned brown, leaves fell off and branches became crunchy and brittle. I kept pruning off the dead parts, hoping something would make it through.

Around this same time, you could say my life was mirroring that of the poor little azalea plant. I was just being confronted with Andrew's diagnosis, and micropreemie Ethan wasn't eating, wasn't gaining weight, etc. I felt like I was carrying the world on my shoulders, and was failing at it. I went into a very dark period of depression, and my life nearly fell apart. I was just sure I couldn't "do this".....being a mom of special-needs kids and dealing with the loss of the kind of pregnancies and parenting I'd expected to have.

Thanks to a wonderful doctor who took me seriously, and to the wonderful cyber-friendships I've made, I've bounced back and made tremendous progress since that time. Things aren't perfect, guess they never will be. But, I pruned off some "dead parts" and kept pushing on, and that's really all that any of us can do, isn't it?

Last year, when spring arrived, I couldn't even see the remnants of the azalea plant. The flower bed had filled in with weeds, and they were crowding out the little azalea shoots........but some heavy weeding cleared things out for the last little surviving buds of hot-pink azalea flowers. I think we actually got one good blossom out of it last year.

Now it's 2008. Andrew's doing superbly in first grade, winning awards and growing taller by the day. Ethan's slowly making progress, thanks to omega-3 supplements, and his weight is finally on the charts! And my Mother's Day azalea? Even during the coldest parts of winter, I saw it growing.......steadily, slowly, pushing on and putting out new leaves. And now it's blooming! The plant still has a long way to go, and there may still be brown leaves and wilted blossoms in its future, but for now.............my tiny flower bed is filling with hot-pink blooms, and I like to think that the revival of that plant represents something similar for me.