Feeling Crappy on the Red Couch

Yep – life is kind of crappy right now. Warning, if you are looking for a poignant, uplifting story about autism, this is not going to be it. I apologize upfront that I’m in a bit of an ugly place, and sometimes, at least for me, this involves venting from my red couch. When I’m really cranky, like today, it makes me feel better to say bad words – so I’m going to indulge. Crap, crap, crap, crap. Yeah, I know, crap is not an all-together horrible word, but maybe not as cute when used by 5-year-old girls (i.e. Ada playing with some of her animals in my closet yesterday walked out and said “Mom, you have too much crap in your closet, but Dad’s is nice and clean”). Yep – it’s true. I’ve corrupted my child, and I have too much crap in my closet. I own it.

Damn, I really thought (and was told by my Uncle Mike – more than once), that one great thing about having 3 kids is that at least 1 of them will be in a good place at any given time. Well guess what, Uncle Mike was wrong. Crap. Maybe I should have paid closer attention to the fact that most of my conversations with Uncle Mike took place after he had indulged in a cocktail or two.

I know I’ve said this before, but it feels especially true right now. Sometimes with autism, at least the autism that exists in our house, it’s not so much the giant differences that make things so challenging, but the constancy of the little things. Autism really truly never takes a break, and sometimes I could really use one.

This winter has been a huge and challenging time for Elliott. I have a feeling it’s a multitude of things – including (gulp) the beginning of puberty. Crap. For several weeks, our days began with screaming, and ended with screaming, and I’m not talking about the cute stuff either. Big, ugly screaming complete with raising his hands to us.

I’ve touched on this before, but for those who may not be aware, Elliott has a history of very challenging aggression, and I live in constant fear of revisiting the horror we lived through. Granted, he was too young to remember it (2-3), and thank God neither does his brother who was his most frequent target. When we started behavioral therapy, we documented over 100 aggressions per day. It was a living hell, and even thinking about it for a split second makes me anxious.

So, when his meltdowns began happening more and more frequently this winter, and the one day when I was asking him to go to his room until he could calm down and he raised his hand as if he were going to hit me, I knew it was time for help.
While I joke about being on Prozac a lot (it’s actually Zoloft, but Prozac just sounds more fun to me), it has been a tremendous help to me since autism became part of my life. That said, while I’ve read many accounts of families needing to go the route of an SSRI for their child with autism to help them, I’ve also hoped that would never be us. It’s never easy to be in that position – as I don’t like the idea of messing with a developing brain – but that’s just one of those hard choices we as parents are dealt, and I can only hope we’ve made the right one. Crap. It’s been a couple of weeks, and (knock on wood) so far, so good.

Henry – well, I just can’t go there right now. I’ll need to revisit that one publicly after I’ve had more time to process it. He’s struggling right now, and we don’t have a solution in place that’s helping as of yet. This one is killing me because frankly, I don’t know how to parent kids who don’t have autism. It feels foreign to me, and I’m not at all confident that Tom & I are helping him in the most effective ways for him. We know he has ADHD, and are learning that it is much more serious than we thought it was. This is just raw and painful right now, and while I know we will get through this, it’s not that fun in the moment. Crap, crap. In spite of all that is challenging for him right now, he is for the most part, blissfully unaware of feeling stressed or worried. I can’t say I don’t envy him for that sometimes . . .

Ada has many strengths, and among them are learning from those around her. Unfortunately, when you spend a great deal of time with your 11-year-old brother who is experiencing a multitude of challenges, they start appearing in new and interesting ways from a 5-year-old. Crap. When Elliott is struggling, it is with almost certainty that Ada is too. This is challenging and painful for me, because in many ways, it feels like the past revisiting again, and not in a good way. As we prepare for her to begin Kindergarten this coming fall, and are beginning to make choices about what school, what type of classroom she’ll need, what kinds of supports she’ll need to be a successful learner, well, sometimes it feels like the weight of the world is upon us to make the right choices for her. She has worked so hard, and it hurts to see her in a tough place right now. Crap.

Man, parenting can be really difficult sometimes. We’ve had a few weeks that I won’t miss, and know that in a few more when things start to look up, these challenges will only make the successes look brighter. But for now, I’m sad, overwhelmed, and cranky. Crap. Now that I think of it, maybe Uncle Mike was right. Not necessarily his sage parenting advice, but about the occasional cocktail. Cheers!


Old Man

Yep – I’m glad January is gone. No, I’m not here to complain about the weather (good Minnesotan that I am), as it’s been so warm and nice around here this winter, well, I just can’t go there. January in our house has a history of being a really difficult month filled with all the ugly elements of autism that are just not fun for any of us. This January was no exception . . .

I’m sure there are a myriad of reasons why January is the pits, and you know what – it’s not all about autism – I get that. January is, let’s face it, kind of crummy for lots of people. The holidays are over, no one is eating junk food, gatherings and social events are minimal, and the festive sprit that envelops much of November/December in general disappears into the cold reality of “getting down to business”. I think for us, it’s a loss of “relaxed” time, and even though this happens for us every year and I should not be surprised that it’s an issue once again, it’s about going from a lack of structure to lots of structure that seems especially difficult for all our kids. Heck, maybe there is something to the Vitamin D thing as summer does tend to be better for all of us – I don’t know.

Worst of all, when Elliott started having more and more challenges as the month of January crept by, (arguing, bugging kids at school, calling teachers by their first names, flushing every toilet in the school bathroom just for fun, making new and interesting noises and clicking sounds, and a basic need for extreme control over everything in his world), his sister starting doing many of the same things – but with her own unique twist.

I know I’ve said this before, but it’s like watching an old terrible movie, where you know the ending, and it’s not good, but you can’t stop it. Except – maybe we can, but maybe we can’t. Ugh. Knowing the challenges Elliott has faced, and then watching my little girl start down a similar path at a similar age is unbelievably painful. I hate it.

Then, add in a pinch of Henry facing his own struggles at school (not academic, yet, but his organization skills are challenging him enough to affect his school performance), and well, it’s not been a fun time around our house. (You know it’s bad if I have not even considered a margarita!)

In the midst of all this ugliness, last week, something kind of cool happened that has made me do a lot of thinking. One day, after school, Elliott had a giant melt-down because we were not going to be able to make it to “Culver’s Night” at his school from 5-6, but because of his friendship group, we would need to attend from 6-7. This literally shook him to the core, and after 45 minutes of him melting down on the red couch, he asked me to join him. We worked through the time change – could the world survive our arriving at Culver’s at 6:10 rather than 5:00, or would it be better to forget the whole thing? Would Culver’s still have cheese curds at 6:10, etc?

All of a sudden, Elliott looked at me, tears still running down his cheeks, and said “Mom, I don’t want you to order kid meals for me anymore at Culver’s because I am not a kid – I am an old man”. Whoa – where did this come from? I was already in the zone for repairing the meltdown surrounding a schedule change, but kid meals, and old men – yikes! When I got myself together, we compromised on “big guy” rather than kid or old man, but the bigger issue is that Elliott is growing up, and in his own way, is asking for more independence and acceptance. Man, that’s kind of big, powerful stuff, and while this does not negate the crappy January that we had, I think he has a point. He is growing up, and sometimes, I am hesitant to recognize that or treat him like an 11-year-old because of autism. There, I said it.

So much about growing up is difficult, and sometimes living/working through the tough stuff on your own is key to becoming your own person. I think, in his own way, Elliott was asking me for more freedom to make his own mistakes, and learn from his own successes and failures. That’s hard for any parent, but when you add a pinch of autism, it’s just that much more difficult. I’m thankful he found a way to let me know what he needs (and if he does not want his free kids meal sundae at Culver’s –well then I do!)

In many ways, Elliott is a wise, old soul. Maybe “old man” was not so far off the mark after all . . .

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