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.

scary reading

I'm a Newsweek nut, I admit it. I keep that subscription renewed faithfully, even when so many other magazines I may have gotten over the years have been allowed to lapse. My ritual is to read it at night, while soaking in a really hot bath after the house has gone to sleep.

I found something striking and scary, though, in the most recent edition. The cover features a picture of a young boy, and the headline "Growing Up Bipolar". In particular, a few sentences stood out and grabbed my attention:

At day care, he terrorized his teachers and playmates. He wasn't the biggest kid in the class, but he attacked without provocation or warning, biting hard enough to leave teeth marks. Every day, he hit and kicked and spat. Worries became guilt. Amy had been overweight and dehydrated in pregnancy. Was Max so explosive because she had done something wrong?

Sound familiar? Other than my name's not Amy, and my son's name is not Max, this could almost be us that they're writing about. Shudder.......

In my gut, I truly don't believe that bipolar is what we're dealing with in little E's case. I really don't. But the ironic thing is that it has crossed my mind, and earlier yesterday I was describing his "possessed state" to someone who said "hmm, sounds like bipolar". Then, I read this article. Just the thing a Mom needs to hear, huh?

So much of the rest of that article very clearly does NOT describe E. Even when the behavior that Max exhibited when he was E's age doesn't all match, and Max was/is much more severely hampered by whatever he's dealing with, but still.....this is just so scary. The thought of heading to Kindergarten in just one year fills me with dread. Oh, and not to mention that I just might be teaching at that school when he arrives. Great, here comes her child, you know, the wild one who doesn't listen and has no remorse for what he does wrong. Yes, that was the comment written for me by his preschool teacher today: no remorse when he does something wrong. No surprise for me, I see it that way almost all of the time. He'll say he's sorry when told to, sometimes without being told to, but that doesn't mean he really feels it or even knows what it means.

I just hate this feeling, the dread in the pit of my stomach when I go in to pick him up in the afternoons. And knowing somehow that nothing much will change after next week's appointment with the developmental ped. She'll just say "he's young, he's immature, he needs structure." Structure. Ooh wow, never thought of that.

to medicate, or not to medicate?

That is the question. We go to the pediatrician on Thursday for E's 4-year-old checkup appt. So, in the meantime, I'm running through every possible scenario in my mind, of how it'll be when we discuss the dreaded 4-letter acronym......ADHD.......and what to do about it.

We haven't seen the ped in quite a while, since my boys have the annoying habit of only getting sick on weekends, when the ped is obviously unavailable. We end up at urgent care, which works fine, but means the ped is WAY behind the times on what's up with E these days.

It seems pretty clear to anyone who spends time with E that there is a hyperactivity/impulse control/aggression issue. Is it officially ADHD? Guess that remains to be seen. For a while before A got diagnosed on the autism spectrum, I had my suspicions and my "mother's intuition" telling me that something wasn't right, and leading me toward autism once I began to research and read. Well, same thing here. The more I learn, the more I think ADHD. And it's depressing. I know I have blessed little to complain about, if ADHD is the worst thing that my formerly 1.5 lb baby has to deal with, but still it's not something you'd wish to have.

All along, even when it was just talking hypothetically, I've always said that modern medicines exist for a reason. They do help people, and have a benefit in many cases. So many people go into "crotchety old person" mode when discussing these kind of medicines.....you've heard it, stuff like: "well, in MY day we didn't have those newfangled drugs. We just had to discipline our kids and make them behave" etc etc etc. But I've always said that if it ever was necessary for a child of mine to take meds, and it would help them, we'd do it without question.

Well, can I take back the "without question" part? Because the closer it gets to the time in which meds might really be prescribed, the shakier I'm getting about the concept. Is it a cop-out? Isn't there more I could have done, or could be doing, before resorting to a chemical solution? Will he have to be on these meds forever? What are the potential side effects? Are the long-term effects even known yet?

Part of me just wants to go in to the doctor on Thursday, throw myself at her feet and say "DO SOMETHING, HELP ME!!!!!!!" Then I'll gather up my prescription for mind-altering drugs and be on my way, right? But the other part of me is worried, thinks that I might be pushing too heavily and too quickly for meds for only selfish reasons......because I'm tired, because I'm stressed, because I'm at my wits' end with him and am just giving up. In other words, don't expect me to work hard and bring about improvements in his behavior on my own, just let the chemicals do it.

And even if we do choose to try meds, which one? I dread the thought of having to go through (possibly) several different drugs before finding one that seems to work without turning my little bundle of joy into a zombie, etc. And going back in for follow-up blood tests to check levels, etc....oh joy, won't that be fun for a 4 year old?

I guess the only redeeming fact in all of this, if you can even call it that, is that preemies have been proven to have a higher incidence of ADHD. Therefore, maybe it is NOT all in my mind, maybe I'm NOT just a lazy mom, maybe there is a true, real, physical reason for his behavior and his struggles with control. We've dodged so many bullets with him in 4 years....IUGR, PDA, failure to thrive, being on a vent, inability to eat, etc etc etc. Today, other than these behavioral/aggression problems, he is a healthy, smart and thriving little boy. And I never hesitated to let NICU docs give him indomethacin for that PDA, right? So if his difficulties have a biological cause, they might respond to a biologically-based treatment......?

Well, I'm not really any closer to deciding what to do yet, but it helps to talk it through. I do know that if we end up choosing meds for him, I'm NOT going to be broadcasting it in our social circles, etc. There's still a certain stigma attached, at least around here anyway. Guess that's another post for another day.

mean mommy

Have I said recently that parenting is tough? I did? Ok, well let's just say it again, shall we?

I truly feel like a first-time parent again when it comes to dealing with Ethan. He's my first NT child (neuro-typical, not on the autism spectrum), and therefore many many things ARE new to me in parenting him. Andrew rarely, if ever, challenges my authority or what I ask/tell him to do. Same to DH. But Ethan, on the other hand, does this 24/7. And I feel like very little that I do is helping to get him onto the right track, either.

So last night, I was "mean mommy" and I hated it. I took the boys to a concert that DH was conducting for his band. There have been instances recently that Ethan showed he could behave acceptably in a concert---sit in your chair, listen, don't talk/sing/kick chairs, etc. On the way there in the van, we talked about the kind of behavior I expected, and offered that any kids who did behave well would be taken to Sonic for a treat afterwards.

Well, let's just say that I had to drag Ethan out of the auditorium before DH's band was done with their second piece of music. I tried a million times to ask him to turn around, sit right, be quiet, stay still, etc, and I got nowhere. I put him in my lap and held him there, as he fought me and even reached out to bite me! I put my hand over his mouth in frustration, and said into his ear "DO NOT TRY TO BITE ME". His response? Laughing. So I just took him out into the lobby until DH's band finished. We went back in, got Andrew, said goodbye to DH and went to the car. Oh yeah, and it was raining by this point.

So I told Ethan we were now going to Sonic to get something for me and Andrew, but not him. I had to, right? Otherwise, what's my word worth? And I wanted to drown my sorrows in a Reese's Cup Blast anyway. Andrew got one of those too, and I ordered nothing else. Whoa, was that hard to do. He cried and cried, kept saying "I'm being good now, I'll be good in the van", etc. When parents say "this is harder on me than it is on you".......they aren't kidding.

He kept asking to get an M&M blast, but when the roller-skates girl came and left....nothing for Ethan. It hit him, and he cried harder. "But Mom, I want a blast" over and over. I tried to calmly remind him why, and then I had to basically just start ignoring him...yeah, right. But I needed to NOT keep repeating myself and trying to explain and justify what I did. Andrew tried to chime in and say "it's because you were bad" but I had to ask him to please stay out of it.

He cried all the way home, but thankfully I got him distracted at the house with a new toy he got at last weekend's party. And some rainbow sherbet ice cream out of the freezer. Still didn't stop me from feeling like mean mommy, though. Hoping I did the right thing and that we won't be back in this exact same spot anytime soon.