Janey is watching Curious George, which has become my 7-7:30 morning respite time. She has no interest in it other times of the day, just that morning block! And I am gearing up for the first day of summer.
I've never liked summer. As far back as I can remember, the first day of summer felt like panic to me. I like a schedule, blocks of time filled with predictable activities. I enjoy the weekend, and holidays, but summer---that's a long time. Couple that with my extreme dislike of hot weather, and even as a girl growing up in coastal Maine, probably the ideal summer location in the world, I didn't like summer.
With Janey, that feeling has grown. Janey loves school. There is barely a day she doesn't get excited to head out the door to school. Every time I tell her it's a school day, she looks like I've offered her a huge treat. This morning, I told her that school was all done for now. She'll start summer school in a week or so, but that is never quite the same. This week is open.
I feel sometimes like the worst mother in the world in how much I dread open weeks like this with Janey. It's not that I don't want to be around her. More and more, I love being around her. But unfilled days for Janey are not lazy or idyllic or creative. They are very tough. Janey needs to be watched every single second. She needs to be kept busy, or she either gets upset or retreats into a repetitive activity like seeking out paper to eat or things to spill. Keeping her busy wouldn't be hard if there were more I could do with her alone. But taking her on any kind of outing, like to the beach or a park or a museum, is not a one person job. She is a runner, and I am not as fast as her any more. She really needs at least two eyes on her, and one of them has to be pretty physically fit. I still can take her to the store, but she hates stores except for grocery or drug stores. I plan to do a grocery shop soon, but that doesn't fill up much of the day. The few times I've tried taking her clothes shopping or browsing a craft store or the like---disasters. (read about one trip I particularly remember here) She will tolerate being read to more and more, but not for more than about 10 minutes in a row. She'll play with her iPad, but also, not for long periods of time, and she'll watch TV or videos, but aside from the fact I don't want her electronically entertained all day, she is too restless to do that for much time in a row also.
What do we do? We often spend a lot of the day in the back yard. If Janey has water and dirt to combine into mud, she's usually pretty happy. But today is rainy and thundery, and even on days that aren't, after a bit Janey is soaked and filthy and we need to come in. Often, I then turn to a long bath time, but Janey no longer is as interested in long baths. So we piece together a day. We read a little here, dance to music a little there, snuggle and sing a little, watch a bit of TV, eat, go to the grocery store, bug her brothers, pat the cats---and it's still 10 am and there's a lot of day left.
What would most 8 year olds do in the summer? Well, most 8 year olds would have friends to play with. With older brothers like Janey, they would have gotten into video games and would be playing them. They would know how to read, and we could go to the library every day. They would be able to entertain themselves with drawing or crafts. They would be able to go to camp. We could go to the beach, just the two of us. We could go to playgrounds without the fear of them running away. I feel guilty, as I always feel guilty, that I dread a day alone with Janey so much. But thinking of it that way, I do see that a day with Janey is not a day with most 8 year olds. There is never one adult alone all day at school responsible for Janey. In the course of the day, she might be under the care of 6 or 7 different teachers, aides, therapists, etc. They do a wonderful job, and I am extremely grateful for them. I can't do their job alone.
And I worry I am coming across as complaining about caring for my own child. Although it might sound that way, it's not the case. It is my job to be with Janey, and my joy. But I wish for her that there were more options open for her open days.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
6 comments:
Tough, oh so tough! I only see this as the Grandmother of our Emma who is 10. Her Dad said to me recently that it is like living in a combat zone.Do you understand what he means? I think that you always have to be alert and on. Hang in there...One hour at a time until her day is scheduled.
It certainly does sometimes feel like a combat zone! Or at least almost---some studies say the stress felt by mothers of children with autism is at the same level as that felt by combat soldiers. I don't think I'd quite say that, as I'm not in fear of being shot at! But the need for constantly being on alert every single second---that's similar. Thanks for reading and commenting!
I am the mother of a nine year old daughter with autism. I just came across your blog recently. While I love summer I can completely relate to your feeling of panic, of trying not to rely too heavily on electronics, trips to the store for entertainment, all of the unfilled hours. My Ellyn can't outrun me yet, my husband and I are runners, but I do sprint after her frequently. Pretty much everything you mentioned in your post I can completely comprehend. I hope you find a groove. I wish you the best.
Thanks so much for reading and commenting, Brooke! It's always wonderful to talk to another parent with an autistic girl, and it certainly does sound like you face the same challenges we do. I wish I was a runner! My sister is, but I am certainly not, and that is becoming the biggest fear of mine. The not relying on electronics is a cause I'm giving up on at points, and I hate doing that. We were out of the house most all day yesterday, outside at parks in the city, but today the TV has been on all morning, and I never pictured being that kind of parent! But the rules all get changed around, just to survive, sometimes. I hope we'll talk more!
Suzanne, I just found your blog a few minutes ago and it is what I needed! My daughter just turned nine last week. She had a stroke when she was born so has some physical symptoms on the right side of her body, but I have come to the conclusion, like half of the professionals in her life, that her brain injury alone does not explain her "autism-like" behaviors. If it looks and sounds like a duck, must be a duck......
Anyway, I have tried keeping my girl busy with community activities and summer school. At first she was happy to go back to school, but then started refusing to get out of bed, get on the bus, etc. She only went about half of the time. I am also babysitting a typically developing girl who is a year younger than my daughter which my daughter has known since the little girl was born. Sometimes it is helpful, sometimes it makes for a nightmare. It starting to wear on me watching the two together. It is like I didn't realize just how delayed/difficult my daughter's behaviors and skills are.
Like you said in your blog, I don't want to complain about caring for my child, but I am having a bit of a down feeling right now. Overwhelmed, etc. Your blog really spoke to me as I can relate to all of it. Thanks and let's keep our heads up.
Susan, I'm so glad you found the blog! I can picture just what you mean about having a typically developing girl around all the time. There would be great parts to it, but some of my toughest times mentally have been when I spend time at Janey's school around other girls her age. I can sometimes almost feel in my mind that Janey's not that different, but then when I see what other almost 9 year olds can say and do---wow. It can hit hard, even though I've had older kids. It must be very tough with your daughter not wanting to go to summer school. That is one thing I've been lucky to never really have to deal with. Janey is almost always eager to go to school, or at least doesn't fight it. If she did, it would be so hard, because I know I would have a very hard time making myself make her go. I've let my younger son stay home from school WAY too often when he just didn't want to go.
The not wanting to complain about caring for our children---i'm glad you can relate to that. I am always telling myself "caring for Janey is my job! That's what I'm supposed to be doing!" That is where seeing what typical kids her age do helps a little. It's truly a world of difference. There is so little Janey can do or wants to do, so few places I can take her, and absolutely no down time when watching her, that it's not the same parenting job as it is with typical kids, but if your mind is like mine, it doesn't totally believe that!
Thanks again for commenting! I am looking forward to talking more with you.
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