November 14th, 2005

This is autism...things go great for a while...and then bam! I have to say that Jakob has had quite a run this time...we've had a very productive up-cycle. But I'm seeing signs of the beginning of a down cycle. It's very cyclical. The tough part isn't recognizing the down cycles, the tough part is accepting them. They're a part of the deal. They're the tough times...the hard times. It's hard to stay patient and calm, positive and awake during down cycles. These are the times when getting out of bed in the morning is scary...because I don't know which Jakob I'm gonna wake up with. We're not at that point yet...but I'm afraid it's coming. And here's where it gets tricky...do I start preparing for a down cycle or do I fight to keep it from happening?? I don't know the answer and I really wish someone would tell me what it is. It's difficult to do the right thing when ya don't know what the right this is. Everything is a test...a shot in the dark.

Here's why I think a down cycle might be coming. I've been noticing a lot of stimming behavior..stuff I haven't seen in a while. Jumping, hand-flapping, lining things up, watching the wheels on his train spin. His temper has also been a little shorter. Today he went from totally calm to totally pissed in no time flat. I haven't seen his fuse that short in a while. He has been pretty easy to distract...but not so much today. We had a playgroup and Jakob was doing great...until the lights went out. We would have been OK if the lights would have come right back on...but they were florescent lights that take a few minutes to heat back up. Jakob didn't want the lights out and let everybody know that he wasn't happy about it. Zero to ten in no time flat. Screaming, tears, stomping his feet...smacking himself in the face. I tried to distract him and nothing worked. We finally gave up and left. He passed out in the car on the way home and slept for 2 hours.

I would have to say that for the last 28 hours, he's seemed a little out of it...just not all there. Maybe he's just tired...maybe he doesn't feel good, maybe his new supplements are upsetting his tummy, maybe he's hungry, maybe he hasn't had enough sensory input, maybe he's had too much...maybe he just doesn't like me very much right now. I go through phases where I don't like some of my best friends very much...I love 'em but they make me crazy. Maybe I'm just making Jakob crazy today. I really wish I could just ask him what was the matter and he could tell me. I know that's what we're working toward...speech. And I know we're making progress. I just get a little impatient sometimes.

It could just be a couple of off-days...or it could be the beginning of a down cycle.

What makes these cycles even more frustrating (to everyone involved, especially Jakob), is ya never know how long each cycle is gonna last. Jakob could go weeks in an up-cycle then have a 1 week down cycle...he could go only 5 days in a good cycle then have a down cycle that lasts 2 weeks. There's no schedule. A schedule would be nice. I could put it on the refrigerator...

There are a couple of other possibilities why Jakob's been a little off. We waited too long to re-order one of his supplements so he ended up going a couple of days without it. Maybe that caused some sort of imbalance in his system. Or...he and I went out Friday night for a few hours (which we rarely do) and then the playdate Saturday morning...maybe that was just too much social activity for him.

Maybe he's had too much sugar. Maybe he's mad at me for trying to get him to eat different stuff. Who knows for sure...only Jakob.

I've had a chance this week to catch up with some other autism moms that I haven't talked to in awhile. They've been going through some rough times lately. I hate to see wonderful mothers have rough times. They're doing such a great job with their kids but they don't see it. They beat themselves up and make themselves physically ill. "Start where you are, use what you have and it will be enough"...looks good on paper...but I so understand how they feel. We're all still pretty new at this and we're manuevering through it. And each of our kids is so different...I'd love to exchange manuevering advice but each one of us is operating a totally different machine. One has the minivan, one has an 18-wheeler and the third one a lamboughini...three totally different rides.

The one thing we all seem to share is how it feels...how it feels to live in denial, to grieve the loss of the life we imagined we'd have, the guilt believing that this had to be our fault and the fear of the future. Not a day goes by that I don't wonder where Jakob and I will be in 20 years. I have hopes and dreams somedays, other days I'm terrified. And not a day goes by that I don't think about who's gonna take care of my baby when I'm gone. That's such a weight to carry. That weight makes it very hard for us to keep our chins up during the trying times.

Another thing we autism moms have in common is how this rollercoaster feels. It's the fastest, scariest rollercoaster I've ever been on...big plunges and turns...upsidedown and sideways...underground...through a tunnel, with loud music blaring, knuckles turning white from hanging on to the handlebars...screaming bloody murder. What ever happened to those old wooden rollercoasters? Those never seemed to upset my stomach.

Also within the last 28 hours, I had a little bit of a run-in with an individual about Jakob's behavior. Jakob was being good. We were in public and Jakob was hangin' out. He was having a good ole time, actually. He was laughing and doing a little singing...apparently too loudly. This woman that was seated in front of us was visibly annoyed. There wasn't a lot I could do...I tried to quiet him down but the more I messed with him, the louder he got. Once again...Jakob was being good...just a little bit of a volume issue. Well...this woman turned around and said to me in a very condescending manner "would he like a cookie"? She obviously thought a cookie would shut him up...she was so snippy. I very calmly replied "he probably would, but he has autism, and is on a very strict diet". She said, and I quote "I'm sure he is" and she turned back around...not to be heard from again. The person sitting next to me almost fell off their chair. I couldn't see her face after that but I was told that she was just seething the rest of the night...seething because now knowing our situation, she couldn't complain. I might understand if we were being disruptive...but we really weren't. If we were being too loud for her, she had plenty of other places in the room that she could have moved to. Jakob and I had already been sitting in the very back corner of the room...the only place left for us to go was home. And I would have taken him home if he was being that big of a problem but he wasn't. He was being good...actually, he was being great. In the big scheme of things, the incident really wasn't that big of a deal...slightly disheartening but probably more typical than not. I know of stories from other parents who have had much more intense exchanges. I'm sure the more places I take Jakob, the more exchanges I will have. It's inevitable. I better start preparing for that. For my first time, I feel I handled it pretty well.

Well, I'm gonna hold onto my shorts and do my best to get Jakob whatever he needs for whichever cycle he's in...I'll be busy.

-Jenn