Susan's Blog

Wednesday, September 23, 2009

Love From A Distance

Sunday night was a bit of a trial for me. Nat did not make his nightly call, so I called the House instead. The staff person was kind of quiet and not only difficult to hear, but he just didn’t have a lot to say about Nat’s day. There was nothing outwardly wrong with what he did or did not tell me. I heard about Nat’s mood that afternoon, and where they went for fun (they went apple-picking). But I did not feel satisfied. The thing is, I don’t even know what to ask, I only know I’ve heard it when I hear it. I mean, when a House staff person gives me a certain feeling about Nat, based on a few things they tell me about his day — that’s when I know I have heard enough.

I asked to speak to Nat. He was the worst, most spacey I have ever heard him: completely out of it, unable to answer most of my questions, dragging out the word “ye-es,” even when it didn’t make sense to answer “yes.” I got that downward tugging in my face, and my mind raced quickly but came up blank. “Give the phone back to —, Nat” I said, again and again, wanting to speak once more to the House guy. Nat could not do it. Or would not? He just kept saying nothing, or “ye-es.” It was horrible. Finally I said, “Nat, I’m going to hang up. Goodbye, Darling. Nat, hang up!” He would not even hang up. It was a terrible feeling, hanging up anyway.

I then called the House back. I asked them to check on him, to tell me how he seemed. But the staff person thought Nat was fine. Maybe tired. I got off the phone. I was not satisfied. I was starting to get angry, which is where my Nat-worry usually goes.

I called again. I asked them to check on him again and call me back. Then, apparently, the nurse came in just then to do a weekly check on everyone. I asked for her to check on him. Then I had Ned call them back. Call number four from us. The nurse told Ned she thought Nat was fine, just a little tired from the apple-picking.

I wrote a fiery email to the House Manager, which I did not send. Instead, I emailed him briefly, merely asking him to call me when he had the chance. Very restrained for me. I didn’t talk to him until today, which was a good thing, because by now I was much calmer and could separate out what it was I needed from them. The Manager was very good at figuring out what needed to be done about Sunday night (from the staff perspective) and also reassured me about a number of things. Also Nat was himself again by Monday (although he’d had one of his rare outbursts that morning, about a pair of shorts with a broken button, under the bed. the House Manager checked under his bed, but there was nothing. But when I heard about the outburst, I went upstairs to check under his bed here, and sure enough there were a pair of shorts under there. No broken button, but I’ll figure out what was wrong with them.).

I am learning that my instincts are pretty good but my impulses get me in trouble. I feel that Nat is well-cared-for there at the House, my gut and my brain tell me so, but sometimes I trip over my wildfire temper. Anyway, Nat is worth the fall.


Sometimes when you write about things like this – dealing with Nat's adulthood – I get this weary feeling in my bones. In my mind I can only view snapshots of what could possibly be my daughter;'s future, trying to look at the whole picture is too overwhelming and I feel like I can't breathe.

For a long time after she was diagnosed I really felt like it was a mistake (she had two full years of typical development) and that she would just wake up one morning and not be autistic anymore. Could it be that I still harbor this wish, deep down? One time I read an account of an autistic boy whose appendix burst and he was put on high high doses of antibiotic and when he woke up from surgery he wasn't autistic anymore. I watched her for a burst appendix for a long time!

What I am saying is that I don't think I've accepted my daughters autism and I've really realized this after reading this post – I caught myself thinking that well, my daughter will be cured by adulthood.

I've got alot of work to do. And I really the way you love and advocate for Nat.

You don't have to show this comment, I just wanted to write it. Thanks.

— added by Susan on Thursday, September 24, 2009 at 9:31 am

Good on you for following your instincts, and also for not snapping. I struggle with that too. Taking deep breaths, which might sound condescending when its suggested, are truly remarkable in keeping one from going medieval. Lisa

— added by Anonymous on Thursday, September 24, 2009 at 10:31 am

I am publishing it because I think others probably feel the same in so many ways you've described. I, too, get the "weary feeling in my bones" when I read some of my stuff and when I read others' accounts. It is a tough thing, dealing with our children's limitations, isn't it? And not knowing what those are, too!

— added by Susan Senator on Thursday, September 24, 2009 at 10:39 am

This must be so hard – love from a distance. And not being able to do anything when that mother instinct kicks in. So hard. I can't imagine how you survive. What courage and determination … and heart. Sincerest wishes, Brenda

— added by Brenda on Saturday, September 26, 2009 at 7:52 pm

I understand about tripping over your temper. Definitely. My baby started Kindy this year, and the school put him in a full out mainstream class (not what we decided in the IEP) from day one. Bad idea. They asked us if they could do it, of course, and I reluctantly consented (I'm the one who handles everything, of course) despite the nagging feeling in my gut that it was WRONG wrong wrong. 3 days into it and he fell apart, as I predicted. It infuriated me, because I had been saying all along that he wasn't ready, but my friends and husband chastised me for being "pessimistic." No, I was protecting myself from the inevitable let down that would come…not being pessimistic. But nobody seemed to get that. Fortunately I have very good girlfriends who listened to me cry and yell and vent, so I wouldn't unleash my undiluted fury on the school. Still, it makes me angry just to think about it. I KNOW my child, and yet, no one listens to me until I'm saying "I told you so" and the damage is already done.

I hate it when no one HEARS me, especially when it comes to my child.

— added by ASDmomNC on Sunday, September 27, 2009 at 9:18 am


The system doesn't improve over time, only the battles change.

All I can say is learn the system, learn how it works, learn what's available, learn what you are entitled to, take a support person with you – preferably one that is not family, tape all conversations – I don't need to do this anymore, but it's on the list of things I should have done and didn't.

Autism contrary to ASAN and the Hub, is not a cutsie club for those "autistics" with real lives, it is a DISABILITY for those who cannot speak for themselves.

— added by farmwifetwo on Tuesday, September 29, 2009 at 12:00 pm

I don't really think of my adult son with autism as having limitations. I only see the system that is supposedly designed to support his needs as having limitations and deficiencies. I have been fighting for improved quality in services for 12 years. Unfortunately there are not enough voices to make real change yet. Funding has remained level or has decreased. There is much government waste and fraud, we need to reverse that and free up resources to improve disability services.

— added by Anonymous on Tuesday, September 29, 2009 at 7:08 pm