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Saturday, August 17, 2013

Partially Respited, Partially Not

This morning, Janey went to the respite house, which we are calling "The Treat House".  They did a trip to the aquarium, then to the beach, then back to play outside.  Janey seemed happy to be going there, and happy when Tony picked her up.  The respite lasts from 8-2.  We were lucky enough to get a scholarship for the rest of the year for their Saturday program, which otherwise would cost $65 a day and be a little out of range.  It takes us about half an hour to drive to where it is, so it gives us 5 hours outside of the driving on days she goes, which I guess will be about twice a month (they have 3 Saturday programs a month, but I'm figuring on average only 2 of them will be something we think Janey would like).  10 hours might not seem like a lot in a month, but once we settle into it and really believe we have it, which still seems hard to believe right now, I think it will be a big help to us as a family.  Today, unlike the first two times, we didn't attempt a meal out with the boys (that was getting expensive)---Tony did housework and I put a few things on ebay.  It's surprisingly relaxing to work when you know you won't be interrupted every few minutes by hysterical crying.

Tony and Freddy are now out for a rare treat---a Red Sox game.  They got free tickets, and I think they are enjoying themselves even though the tickets are in one of those spots Fenway Park is famous for---an obstructed view seat, which means just like it sounds like it means---you can't really see the field.  But you are there!  William has gone as our sole family representative at a party we were all invited to, and Janey and I are here.  It's been---tiring.  I start times like this with all kinds of resolutions to keep Janey happy.  We went in the wading pool, we read together, I watched a video with her, and then she started freaking out, for no reason I can figure out.  REALLY freaking out, as she does lately---scratching herself until she has welts, screaming the same nonsense sound over and over, trying hard to bite herself and me, flinging things--all that.  At the same time, predictably, my afternoon tiredness kicked in.  I think being Janey's mother alone could cause it, but it also is caused by the one autoimmune disorder I have been formally diagnosed with, Sjogren's Syndrome, and the other two that blood test show I probably have, but which I don't yet have all the symptoms of, lupus and scleroderma.  Just for fun, I also have a severely underactive thyroid, which I'm taking about as high a dose of replacement as you can take, after having my dose raised over and over.  So the tiredness---yeah.  It's pretty bad.  Times like this feel very, very, very, very tough.  The morning's respite feels a million hours ago, and I feel like I am not grateful enough for it.  I struggle to stay awake, and not just awake but alert---alert to Janey's self-destructive behavior, to her grabbing every food around to take a few bites of and then throw the rest on the floor and step on, to her pulling stuffing out of the couches, to her taking off her clothes over and over, to the possibility of her using the floor or furniture as a all of that.

And so, what is my point?  I guess it is that I feel guilty.  I feel guilty that taking care of my own child is so tough.  I feel like I should just be feeling grateful I had respite this morning, that she went to 6 weeks of summer school, that she will soon be starting school again, and still, just an afternoon and evening alone with her is so hard.  I am angry at my own body, for feeling old and tired, for having stupid disorders that make me tireder.  I am guilty feeling when I read blogs about people that homeschool autistic kids, that seem to have it all together, although in my realistic moments I know that even among autistic kids, Janey is tougher than most, and that what goes in a blog doesn't tell the whole story.  I am my own toughest critic.  I feel like a failure for not having "cured" Janey, although I would be the very first to say autism isn't curable, and to tell any other mother that such a guilt feeling is one they should banish from their minds for good.  I know once I sleep, once I get a bit more housework done, once I have a chance to regroup, I will be able to take a more positive, proactive stance.  But in the meantime, thank you to each and every one of you for again being there when I need to talk.


Sophie's Trains said...

Wow I can't imagine doing what you do when you are so ill :( you have to be gentle with yourself. When I was pregnant with my youngest I was so tired, and of course I felt guilty too because Sophie regressed then and I thought maybe because I only had energy to put videos on for her. Of course that is ridiculous.
We can only do the best we can. The truth is when our health is down, we lose motivation to do everything, cleaning, playing etc. I am just heartbroken that you have these chronic conditions and that you feel guilty about it. Take care of courself, be gentle with yourself, enjoy the brief respite you get. Janey is absolutely lucky lucky to have a mom who cares SO MUCH.

Suzanne said...

Thanks so much! You have lifted my spirits as you have so often done! I get completely the guilt about the pregnancy and the videos. I can work myself in a huge guilt session thinking about any TV viewing Janey did before regressing, as well of course anything and everything I ever did or was exposed to or even thought about before she regressed! I will try to be gentle to myself! I tend to just think if I don't admit I have any health issues, they will go away (that's the Maine in me) but they seem to not have gotten that message!

suenestnature said...

Wow! I am not sure how you do it! I live with a head injury and part of the hard lessons I have had to integrate has been "if you aren't taking care of yourself, then you cannot take care of anything else". You deserve your respite time! And cut yourself some slack; you rock. thanks for sharing your story.

Renee said...

Take care of yourself my friend, I will pray for your health, you are your children's guardian angel. I am sure your employer sees all that you do, he will watch over you.