Michelle and the Terrible, Horrible, No Good, Very Bad Day

I'm right on the edge of being able to cope. We're about to fall off the bridge financially, with the economy - and between that and my autistic son Danny's behaviors for the last couple months I'm getting very discouraged. I can cope with just about anything if the kids are doing well, but Danny is having a difficult transition to middle school (complicated by a change in medications and the unexpected simultaneous loss of his long-time one-on-one aide). He’s been shouting, spitting, giggling wildly, and not learning a damned thing for almost 2 months. These behaviors have spread from school to all the other areas of his life with no end in sight, and it’s wearing me down. One of his most delightful new behaviors is using his fingernail as a screwdriver to unscrew all the electrical outlets and light switches. The fun never ends around here.

Sunday morning, to start off the Terrible, Horrible etc. Day, I forgot about the time change. I woke up suddenly at what I thought was 7:50 a.m. - had to leave at 8 for Danny's Hebrew school - and the sitter wasn't here yet. She was due at 7:30. After racing to get myself and Danny dressed, I called her in a panic. She reminded me to change the clocks. That’s how the Day from Hell began.

Danny was very difficult at Hebrew school – so difficult we had to leave early and I burst into tears. When we got home, I was going to take a nap before dropping Rachel (my teenager with Down syndrome) off at her social group. But Danny continued with the yelling/shouting/screaming, and it set Rachel off into a full meltdown with – you guessed it – even more screaming. I honestly thought the cops were going to be at my door any second. It was time to leave for Rachel’s event and she was refusing to get dressed and was screaming...I just freaked. I wound up SCREAMING at her since I was on such a short fuse - I feel really bad about that. It did shock her into shutting up and the poor thing apologized to me – which made me feel even worse – sigh. I finally got Rachel dressed and out the door. As I was driving her to her group, I called my husband Alan and told him that at that point I was ready to give up and asked him to pick up Rachel up from her social club so I wouldn't have to rush around to get back in time to take Danny to HIS youth group event. He whined about having to work (finances, remember?) He finally agreed to pick Rachel up when I said I would swallow a bottle of pills if I had one handy (only a slight exaggeration – I was fantasizing about ways to end it all).

Later that afternoon I took Danny to his youth group event at the temple. The kids were soon out of control - the youth director was not there and her untrained assistant was trying to run things. I helped as much as I could but then they were making pizzas and there was crap on the bottom of the oven which set off the fire alarm. Nobody, including me, knew whom to notify when the alarm went off, so we had the fire department out, which added to the fun (eek). Meanwhile the kids were starving and wild. A little later the rabbi showed up and was not pleased. In the midst of all this chaos, Danny actually did fairly well there - we only had to leave 20 minutes early when he started screaming again.

But my tale of woe is not done yet. The second I walked in the door at home, there was a call from the police in Santa Barbara - that they'd found my son Steven's car with the rear window smashed out. I didn’t make it to the phone in time to ask any questions. We called Steven immediately - but he didn't answer his phone at first so of course every horrible possibility was running through my mind. Luckily he called back within 10 minutes or I might have gone totally insane from worry. When he called, dh handed the phone to ME, as he had no clue what to do about the situation. Steven had been in his apartment studying, and hadn’t even been near his car in 2-3 days, so no telling what happened. He said it probably happened over Halloween - Isla Vista gets nutty on Halloween. Steven was all crabby about having to deal with this on top of everything else he's doing. (Yes, the adult men in my family both get crabby when called upon to handle anything unexpected – charming, right?) Can anyone direct me to the line for handing in my resignation from this family? There was a play or a book or something decades ago called "Stop the Planet - I Want to Get Off!!" - that's how I'm feeling.

I was thinking as I was driving Danny to his event, midway thru the Day of Terror, that I had to remember I can't fix everything and I need to start letting things go. But then I got caught up in it all again when the damned fire alarm went off. So today I gave myself most of the day off. I went out to breakfast, then came home and took a long, long nap. Now I need to go buy something for dinner so my day off is over – but I am feeling a little more relaxed. Perspective, perspective, perspective.

Thanks for letting me vent!

Introduction

There's a famous story in special education circles called "Welcome to Holland." It basically says when you have a special needs child, it's like you've planned a trip to Italy for years but your plane lands in Holland instead. You're disappointed to miss Italy but there are some lovely tulips and windmills in Holland. (The story doesn't mention the legalized dope and prostitution there, lol.)



There's a follow up story by a more realistic mom called "Welcome to Beirut." This story relates what for me is a more realistic analogy. I expected to land in Italy, but instead crash landed unexpectedly in Beirut, where I was immediately kidnapped, gagged, bound and blindfolded, dumped in the trunk of a car, and driven off over bumpy roads to an unknown but terrifying destination.



My name is Michelle and I live in California with my husband and three kids. My second child is 16 and has Down syndrome and my "baby," now 12, has autism. My oldest is more or less typical and is in his senior year of college. Over the years I've managed to lose the blindfold, gag, etc., and although I still feel like I'm in a confusing and dangerous land, I have a couple of roadmaps (no GPS yet) and some allies in the battle to find and access appropriate services for my kids.



This is my first attempt at blogging so I'm not entirely sure what I'll be writing about, but I'm excited to get started and see where it takes me.