Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it. I think you were right. Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script. She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness. With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.
Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days. This is how it went....First, she woke up about six. I snuggled with her a bit, we had some breakfast, she watched a little bit of TV. Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us. We did the routine of getting dressed for the day, and walked to the store. Janey loves this. I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home. Then she ate the chips outside while I had my coffee.
Next, we went back inside for a little more videos time. Then, Janey asked for a shower. I set it up and she had one---washing her hair or not depending on if she needed it. I let her take as long a shower as she felt like. We got dressed again, a little more videos and then Janey asked for a car ride. I suggested a place, which didn't really matter, as she wanted simply to be in the car. We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.
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| The huge hug when Daddy gets home |
When we got home, Janey screamed because the car ride was over. That's where the routine still was routine, but not a very fun one. For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy. As early as I could do it without it being too long, we went outside to wait for Daddy. When he got home, Janey acted like she was seeing a returning soldier after many long years. The smiles and hugs were incredible. Then they went for the kind of car ride she really likes, long and without destination.
By last night, I was in a mood and a half, and I realized something. As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do. And I was bored, frustrated, hurt, tired.
The ride yesterday was the last straw. For the ride, I said we could go to Panda Express. None of us but Janey like this fast food Chinese food, but she loves it. However, I didn't realize that she had a routine in mind. There was a line when we got there, as it was lunchtime. I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people. I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go. I had barely had a bite. She grabbed the tray and wanted to throw it out. She was rapidly becoming frantic and hysterical. I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.
Then, Janey wanted to go in the Chipotle. I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead. Then, they came over to see us at the Chipotle. The fact that the boys are away at college and Tony was at work didn't matter. We were supposed to go in the Chipotle and see them. I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.
When Tony got home, I started ranting. I had done everything I could for four days to make it a week that would work for Janey. Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it. I was tired of trying so hard to keep her happy. I was tired of dealing day and night with screaming. I was tired of....well, all of it.
And that's the thing of it. All of us autism mothers and fathers are human beings. We do our solid best. But sometimes, it gets to us. And that is where it gets hard. Because what do I do? There is no break from this. There is no end to it. There is no day that Janey's needs won't be overwhelming. This is my life.
Last week I talked about the lack of programs or activities for those like Janey, with high needs autism. The truth is, Janey doesn't much want outside activities, I don't think. I do. I want the break they would give me. But the few activities that do exist---classes and therapies and so on---require I be there with her. And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway. It's me that needs variety, and a break, not Janey.
I got over my rant last night. I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today. But I keep being struck by that one thought---parents of kids like Janey are people too. Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.
4 comments:
Well said! Sometimes you see these blogs and articles by written by autism moms, and it's all "I made a great sensory bin, my kid loved it!" And then I just feel badly, like I'm not doing enough, or that I shouldn't feel annoyed by the utter sameness of each day. Thank you for being so honest. I look forward to your posts because they are so real, so relatable. And Janey sounds wonderful , she really does. But I get your frustration. Like your Janey, my Janey is a fantastic, lovable girl who has many gifts...but autism isn't one of them.
Please allow yourself to be human. You are doing a great job raising Janey.
My daughter doesn't have meltdowns a lot but they are a pain in the butt. We avoid going into restaurants due to her inability to behave with the sensory overload and her general notion it's playtime in the restaurant. Anyway, she can't be satisfied at some point and she cannot fully explain what she wants so it's meltdown time. More frequent are her comments about not wanting to ride in the school bus or go to school. She also tells her ABA therapist "bye Jessica bye" when she arrives at the house. She threatens to break things and push people. She doesn't actually do this stuff at school because we never get reports like that. Apparently, she has more self-control in school and saves her pent up aggression for home. To me the difference between a meltdown and a tantrum is that the meltdown doesn't go away just by the parent giving in and the kid has less control of themselves.
Thank you for writing this, it is exactly how I feel a ton with my daughter Haddie Rose who is almost 6. People keep saying it will get easier as she gets older, but I don't know if that is really true. Shes ASD, SPD, and Anxiety, high functioning which I find a joke bcuz people act like oh no big deal. Or you're not "bad" enough to get disability. You're right she speaks but at times she still can't tell us what she wants so she becomes violent. The days are long and hard, and as u mention mundane. I joke no matter what I do, I fail on a regular basis. I can do everything in the routine the same and one day it works and the other day she falls apart and has a meltdown. So exhausting emotionally and physically for u or me. Anyhow, thank you for writing this.
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