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Thursday, February 21, 2013

Two hours of morning

I wake at 6 am, or rather Janey wakes me up.  That's nice and late compared to her standard waking time, and I am full of energy.  I'm determined this day is going to be different than the rest of the vacation days.  This day, I'm going to get a lot done---lots of dishes, laundry, and also lots of creative and educational activities with Janey.  I look at my yesterday self with scorn---why do I get so lazy?

Now it's two hours later.  Janey is watching PBS, for the moment, and I'm sitting here with my 3rd coffee trying hard to summon up the energy to do anything.  As is often the case when I am overwhelmed like this, I turn to here, to this blog.  Thank you, my dear readers, for listening!

What wore me out?  Well, lots of things.  A lot of it is just doing the standard morning things with Janey----getting her dressed, fed, her hair and teeth brushed.  None of it is easy.  She doesn't cooperate with the dressing---passively---she walks away in the middle or acts like she doesn't have any idea how to put legs in pant legs.  She demands foods we don't have for breakfast, and settles for a half loaf of stale French bread, which she crumbles into thousands of pieces while eating it.  She is eager to have her teeth brushed, one of her favorite things, but I somehow do it wrong, and she starts slapping me repeatedly, resulting in the useless time out on the couch.  And hair brushing is always hell, as she screams like I am trying to kill her, but when I stop, she demands more brushing.

A few random times other than those, Janey is angry at me.  She does her new behavior---suddenly and out of the blue attacking me, hitting me and looking furious.  I hold her at arm's length, and she moves in with her head to headbutt my cheeks.  It's truly a bit scary.

Finally, a little break.  There is no cream for coffee, and William wants cream, so he offers to watch Janey while I walk to the convenience store.  I tell you, that walk feels like a huge treat.  I don't realize some days how isolated I get with Janey.  Just being in a brightly lit store full of assorted foods feels strangely thrilling.  I get the cream and some cat food, and wish the line was longer, as I listen with interest to the cashiers talking about how they don't get paid enough to train new employees.  The conversations seems fascinating to me---an exotic piece of the world outside our House of Autism.

And now it's just past eight, and I'm about done for the day.  Any energy I had is spent.  I have 9 hours to go until Tony is home, so of course I'm going to have to keep going, but it's not the energetic, creative keep on going I wanted to have.  It's the get-through-the-day-with-all-of-us-alive type energy.  Once again.


Sophie's Trains said...

Hugs to you. Maybe a part time job in a non-stressful environment would be a good thing? When Janey is at school, at Chapters or something. It is important to be able to get out of the house and think about other things other than autism. I had a family friend who had a severely autistic son. Her part time job at a shoe store was her respite, her sanctuary. We all need to recharge. I hope your day is going well!

Suzanne said...

I've thought about that! At this point my constant exhaustion would probably make me a less than ideal employee, which is what makes self-employments work fairly well---I work when I have the energy. But it was something how hearing even that non-exciting employee complaining seemed so exotic and interesting!

wellymom4 said...

I'm new, so you may have already mentioned this, but do you have or have you done respite care in the past? I never did because I worried that nobody could possibly put up with and have patience with my daughter as much as I could. I also wondered if she would be worse outside of her home and normal routine. It was suggested to me many times. It wasn't until a brief hospitalization, until I realized how good it felt to have a few days off. They say being a Mom is the hardest job, well being a Mom to a child with autism is triple that! You have to find some way to get a break and recharge. Hugs to you.

Mary Leonhardt said...

Hi Suzanne,

I found your blog when I went to check the early reviews on my book Keeping Kids Reading. You wrote a very nice review in 2000. A late thank you!

Crown eventually let the book go out of print, so I got the copyright back, and have just updated it and put in on Amazon as an e-book. Amazon won't move the reviews from the Crown edition over to the e-book one, and I originally looked you up to ask if you would do that.

But then I started reading your blog. Oh my heavens, Suzanne, I don't want to ask you to do anything! My husband and I raised three children, and are now helping with 5 grandchildren, but nothing we've done compares with what you are doing every day. During my last few years of teaching at Concord-Carlisle (I retired in 2008) we did have some kids on the spectrum mainstreamed, but they were higher functioning than it seems your daughter is.

Your blog is wonderful. I feel really drawn into your life when I read it. I was always telling my students: don't hide when you write. I wish I had your blog then to show them.

Oh, I read your blog on your daughter's nighttime waking. I have restless leg syndrome, and so have done a bit of research on sleeping. Here's an interesting article:

The main idea is that glutamate keeps us alert. At night, another neurotransmitter, adenosine, takes over and causes sleepiness. There is a study now at Johns Hopkins on whether or not RLS sufferers have too much glutamate. I thought--maybe we don't have enough adenosine.

So I checked around and found out that adenosine is the main ingredient in a sugar called D-ribose, which is easily available, since it's used by athletes and people suffering with chronic fatigue.

So I've been trying it. It may give athletes more energy, but it is really helping my sleeping. And since it's just basically a sugar, perhaps it is not as strong as melatonin, which I won't take. It makes me feel awful. The D-ribose doesn't seem to affect how I feel at all-except I'm not jittery at night but just sleepy.

I'll keep following your blog. I think I read somewhere that you said your older son, who is also on the spectrum, became an avid reader. Yes? If so, could I interview him? It's easy to update e-books, and I'd love to include an interview with him in the book.

Anyway, thanks again for such a nice blog.

Mary Leonhardt

mknecht24 said...

I had to laugh out loud at dragging out a trip to the store! I was at a doctor's appointment once and had to wait a rather long time in the room. The doctor apologized, and I told her it was the most peaceful break I'd had in weeks...sitting in a quiet room reading outdated magazines. Caring for a perpetual toddler is very tiring.