Blogging the Bad Days

Yesterday wasn’t such a bad day, really. The Bug woke up early, but what else is new? He took a 2-hour nap. I got to shower all by myself. I had lunch with a friend, and while the Bug was a handful he was not an utter nightmare. Eric got home early. I made dinner and my spaghetti sauce was one of my better efforts.

But sometimes one moment can derail you. I encounter a lot of these moments and I’m getting pretty good at moving on and keeping a cool head. There’s little things like passing a young child talking and pointing. There’s bigger things like when the Bug had a complete shrieking meltdown at the pharmacy the other day.

Yesterday it was a tiny, practically nonexistent moment. I went over into the dining room to switch off the power strip. It was late and dark outside. We have been beyond lazy about getting window coverings and so our dining room windows are only a few feet away from our neighbors’ dining room windows. They are normal people with curtains and blinds so this isn’t much of a problem, but occasionally we get a tiny peek into their house as we walk through the dining room.

I got a tiny peek yesterday, into 2 of the sets of windows. (I was not spying, that power strip is right at the window.) I didn’t see anything that would surprise anyone. Just two dining rooms, one empty, one with two people sitting at the table on their laptops.

I have been doing pretty well lately, if I may say so. I have had plenty of crabby days and days where I feel frustrated. I have not been destroyed. I have been carrying on and not dwelling and doing my best. But that one second was like a knife in my heart.

Those two dining rooms are each home to a toddler about the same age as the Bug. They are both beautiful little kids. We see them from time to time and I’ve mentioned them before. (If you look in the dictionary under “sack of flour” you’ll find a picture of them.) These babies are experts at making me feel bad. They are not malicious babies, they are serene and lovely as freaking cherubim. At least if they were strange-looking babies I could comfort myself that my kid is far cuter than they are, but these babies belong on a calendar or a Baby Gap ad. (So does my Bug. They are not superior in terms of cuteness, but they are easily in his league. And I do not say such things lightly.) This is exactly the problem. They are lovely and sweet and docile. They tend to stand there looking almost puzzled as I chase my hell-raiser around.

So I’m sure you understand that just on those grounds alone, those two dining rooms would make me feel bad. But it was soooo much more than that last night. It was their blinds and curtains. It was their lovely tables with flowers in the middle. It was their nice furniture, their decorated walls. They live in beautiful, tastefully decorated condos that they own. We live in a lovely but not-even-close-to-decorated apartment that we rent but can’t really afford. We have little furniture and most of it is from Ikea. We rarely eat at our dining room table because we are those terrible people who eat while watching television and because the table is usually covered with random stuff we have nowhere else to put. They have jobs and obviously make a good living. They get home at 5 and eat dinner together. I am unemployed and Eric’s salary alone simply will not cut it. Eric often works very long hours and there are plenty of days where he only sees the Bug for 15 minutes or so in the morning or doesn’t see the Bug at all.

But more than that, more than all of that stupid stuff, they get to go to bed at night knowing they have normal and happy kids. I do not know if that will ever happen for us. It makes me really sad. And it makes me really angry. There are plenty of people in the world who go to bed at night without worrying about unemployment and bills and insane cost of living. And to put a nice coat of icing on that cake… No, scratch that, next to that miserable cake is another cake, a cake big enough that someone could jump out of it that has loads of icing and candles and that someone has been nice enough to decorate with the phrase: Happy Autism!

I thought I was doing really well at not being depressed. I also thought I was doing really well at not being angry. I do not want to resent 99.9% of the population. I don’t even want to resent my neighbors, who are very nice. It is hard right now not to feel like I will always be vulnerable to these little moments that reveal to me just how much my life isn’t. I know there are stages with this stuff, but I would like to just skip to the acceptance already. (After all, I skipped denial. Why not skip the rest?)

My shrink is out of town this week. (Yes, I have a shrink. Did you miss that part about how I am unemployed AND have an autistic kid? How would I survive WITHOUT a shrink?) Usually I would have hashed this all out there. I don’t want my blog to turn into a self-wallowing pity party of despair. But I do have one rule that I follow with this blog: I will not cover up the messy stuff and pretend we are totally happy all the time. That is my guiding principle. And since I have to hash this out some time I might as well hash it out here.

In an hour the nanny is coming to take The Bug to the toddler class at the library. I will get a little break. I wanted to write this BEFORE that break so I didn’t waste it wallowing.

Speaking of the Bug’s class, it was my first brush with special needs accommodations. Last week the nanny took the Bug to his class, got there nice and early. The Bug is not so good with waiting. She let him run around the Children’s section before the class started. Around that time she went over, but the teacher wasn’t there, they were running late. She took him around again and when she came back the door was closed. And they wouldn’t let her in.

I e-mailed the librarian, told her what had happened and asked if she could give us a heads up before class. She agreed. Easy as pie. I know it won’t always be so easy, but let’s take every positive point we can.

It’s still pretty early, I can’t tell yet if today will be a good day or a bad one. But for lunch I will have some of my leftover scrumptious spaghetti sauce. I have our meals planned for the rest of the week. I am going to try and roast some sweet potato and carrots for me and the Bug. I already have a peppy blog post planned for tomorrow. And I get to send some lucky person to SeaWorld. It could be worse.

10 Responses to Blogging the Bad Days

  1. Marylin says:

    Oh honey, it’s hard isn’t it? I’ve come to realise that actually, these people are so lucky, but they have no idea. It’s not a purposeful ignorance, they are just living their own lives. Just because they seem to have the perfect life though, doesn’t mean they are. Everyone has their own problems, and though sometimes ours can seem insurmountable, it’s not.
    You can and WILL get through this!
    Our special little boys have been given to us for a reason. I truly believe that (and I’m not religious in any way shape or form!). My wee Max has really been the making of me. I’ve grown so much, and you will too.
    You have the support of many people all around the world, as well as those close in proximity to you. Never forget that.
    You’re doing an AMAZING job with your little man. YOU. ARE. AWESOME.
    Never forget that either!
    *hugs*

    • Jess says:

      Thanks, dearest. I hope my post didn’t come off as pandering for support, but I do appreciate it. It helps to see people who are super well-adjusted like yourself. I am working on it…

  2. Marylin says:

    Of course not! We all have to deal with these things in our own way! I did very similar when I had first found out about Max’s “most likely” diagnosis. Writing is such a cathartic process. It’s good to get it all out. You will get there sweety, it just takes time. :) xxx

  3. If BY Yes says:

    Funny you posted this. I have a post coming about how weirded out I feel when I see other babies younger than my baby, thus giving me something direct to compare him to.

    In the meantime, can you accept some reciprocal jealousy from me, because you used the word “nanny”? Oh, to have a nanny!

    • Jess says:

      I know, having a nanny feels so luxurious. In reality we had no choice since last year there were lots of days where neither of us was home until nearly midnight. So yeah, day care wasn’t quite an option. Now that autism is in the picture we think we’ll stick with a nanny for at least the next 6 months. But I love saying it. “Our nanny.”

  4. Janet says:

    Just found your blog and was doing a little reading. One of the moms in my autism support group says that all moms should be given a ‘script for mental health drugs at the same time they get the ASD diagnosis for thier child. I think there is some truth there.

    My 8-year-old has autism. He is non-verbal. He is a sweet heart. There are days when he drives me NUTS. I am fortuante, I have a job. I am envious of you because you have a spouse (I’m single and built my family through adoption).

    Will life get better? YES! Will it be the same as the family next door? NO! But that is OK, because, in time you will find your own thing.

    • Jess says:

      When they came for our Early Intervention intake meeting they asked me all sorts of depression screening questions. Which didn’t surprise me at all, I was glad they were there. Man it takes a toll on me.

      Thanks for coming by. I hope to find my own autism support group once we find our sea-legs, so to speak.

  5. [...] I’m usually too exhausted to stay up past 9. The day seems to go by in a haze. But I remember those really bad days. I think of how much better things are now. And it [...]

  6. Jenny says:

    I know this post is old, but it was linked to a recent one, so I just found it. Thank you for writing it. It’s not that I want people w/ children w/ ASD to be miserable all the time, but it is refreshing that everyone has bad days, even those who seem to have it more together. Everyone has days where innocent people in your neighborhood or shopping center can make you feel bummed about how easy they seem to have it & how hard things can be for your child. Every week, I take my child to a kid’s gym class where he is the only clearly not neurotypical child – and every week, I have at least one really low moment during that class, watching the other kids his age do so, so much more than he can & see how much their parents take it for granted b/c that child’s taking & doing somersaults is just a daily thing. And then my son does something really amazing (for him) – and his teacher is wonderful & shows that she knows how cool what he did is, so I feel happy again & keep our membership.
    I agree with the person who says that we should be given scripts for meds – I’ve been taking an anti-depressant for many, many years before I was ever a mom. I clearly need a stronger one now – and time to return to talk therapy – but neither has found time to happen yet. Hopefully soon – waiting for just 1 more therapy session to be scheduled for my son & then my calendar will be a little less foggy.
    I would also like a dark chocolate cake that says “Happy Autism” & a complimentary cocktail.
    We will soldier on.

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