Susan's Blog

Sunday, February 19, 2012

The feelings remain, regardless of the name

Nat is not low-functioning. I hate that term. He would definitely be considered so, by many in the medical profession, and the rest of the world. I, too, have used it before and I am not going to anymore. I’m a writer, dammit; I should be able to come up with a better term.

There is so much in this blog about labels. I am too aware of the power of words to act like labels don’t matter. I am very tired of talking about this, and yet, I can’t stop. It keeps coming up, the question of whether to use Person First language, (“People with autism,”) or the other (“Autistic person”). Autistichoya makes very good arguments about the latter; Tim Shriver and the r-word campaigners makes very good arguments about the former. As always, my Libra self wants to be a bridge.

But I’m feeling tired of playing bridge. I’m worried about Nat and so I am going to be just his mom. I feel like what the hell does it matter, who calls him what. The problems, the guy, still remain. I love the guy. I hate the problems. I know I should be happy that he has a safe and supportive placement, one that I helped create. One that is going to have people there all the time. One that has made the future now.

The future being now is a scary thing. They told me that I could now have them take Nat to the doctor from now on. The staff is there for things like that. That they are to be responsible for all the medical and dental stuff being done timely, they have recently started using the best water flosser, and have said it helps clean the gums so much better.– state regulation. Hah, that’s going to be better than I’ve done. They also said of course I could still do everything, but they would need to keep track of it all, just the same. I’m never going to have to do those things if I can’t — when I can’t.  They’ll take him to Social Group if I want. They will provide an entirely additional Social Group. It’s all good.

Then why do I feel sad about it?

Because it is exactly what I tried to do, which is the hardest thing a parent can do: I planned for when I wouldn’t be here. I took care of it. But — my God.

And then there’s what I still can’t do, can’t ever take care of: helping Nat himself deal with my being gone. Anytime I imagine something bad happening to Nat and then — not even understanding why! How terrible, how horrible. That is what matters. That is the piece where functioning level is important and poisonously apt. Let me talk about it, okay?

And also, there’s this: my Nat is sometimes a puzzle to me, more than my other two sons who talk — oh, I’m not supposed to say those things either, right — and that saddens me deeply, too. That is a parent’s plight, that is a parent’s right. It doesn’t matter what we call it, the feelings remain.


My Joey is only nine, and I’ve been thinking about those labels and that future. We’ve gotten here so fast, I know I will blink and that future will be the Now. Joey is considered “high functioning”, and I still cringe at the term. As I told his teacher the other day, in some ways he’s 15. In some ways he’s still 5. What does that do for actual ability to survive in a world that will judge him with labels, and have no way of dealing with labels that appear to conflict?

— added by Joeymom on Monday, February 20, 2012 at 7:50 am

Susan, you can say whatever you want, any way that you want to say it!! There are many things that Nat can do, and many that he can’t. That’s not so say he never will, like it’s not to say that I will never be fluent in Czech, which I am learning. Functioning level is not static, it does not define an entire person, it can’t. The nuances of who your son is are so much more important than a “level”, and people will understand that. There may be parts of him that you will never see, that others will, and that’s okay too. That shows growth on his part and all of our children grow away.
Tomorrow, Nat will be Nat, and you will be you. That day in the future, when our children will have to live without us (and they will) is not today. They don’t go from where they stand in our living rooms right now, to this mysterious someone learning to deal with our absence. There is a journey involved and regardless of autism, and my daughters “ism”, they will take the journey, whether we are ready or not! Keep saying whatever you want to say, you are reaching people and you are helping your son and yourself. All very important and relevant. M

— added by michele on Monday, February 20, 2012 at 8:13 am

You have helped me (and probably others) countless times on this blog. Thank you.

— added by Susan Senator on Monday, February 20, 2012 at 8:16 am

it doesn’t matter what we cal it, the feelings remain.


and hugs.

— added by jess on Monday, February 20, 2012 at 2:20 pm

You can say whatever it is you need to. The powers that be can argue until they are blue in the face. What it boils down to, the real crux of the matter is that these children of ours, these loves of our lives, are our children every minute of every day and no matter how we word it, nothing changes what it is. Perhaps being real is far more important than being right? I don’t know, I have no answers.

— added by annemarie (@YLMBreadless) on Monday, February 20, 2012 at 3:32 pm

“It is what it is.” That goes for everything, right? But for whatever reason we find the need to level or grade things…in a sense compartmentalize. With everything, whether it is our autism, he has autism, yes but he’s considered _________ functioning, be it high or low. We need to focus on the “functioning” part. If someone has a heart attack, we find ourselves grading that too, “he had a heart attack but is was only mild”…or massive, whatever the case may be…it is what it is! I don’t know why we feel the need to do this with everything. Every person has things they are pretty good at and everyone struggles with something in their life. All parents struggle with the thought of their children carrying on without them. But for many the thoughts linger in the area of will they be fullfilled, get married have babies. But for parents who have children with autism, we just want happiness for our kids and the knowledge that whatever responsibilities we hand over to others- those things will be carried out with respect and honor. So I think we need to allow ourselves whatever insecurities, fears and stream of emotions that present themselves. Celebrate when we’ve done a good job and admit when we either screwed up or when things didn’t necessarily turn out the way we intended. Because…it is what it is!

— added by PamG on Monday, February 20, 2012 at 6:04 pm

Preparing our children for that time when we won’t be there is the ultimate goal. But it’s a really hard thing to face your mortality every ding-dong day. It robs the present of some of its joy. I remind myself that I don’t have to think about that *every minute*.

To acknowledge these very real challenges and fears doesn’t mean I see my son as a burden. My own anxiety? Oh, yes, that’s a burden. I hesitate to write sometimes now, because I read my own thoughts and feelings through self-advocate eyes. I pulled the blind on my own blog about my son as a result. I feel what I feel, and think what I think, quite imperfectly. I’ve decided that’s okay.

— added by Dixie on Tuesday, February 21, 2012 at 5:38 am

Dixie, this is really making me think. Thank you.

— added by Susan Senator on Tuesday, February 21, 2012 at 6:27 am

We all have a right to our feelings, and the right to express them. There have been days when things have been so difficult with my boys that my feelings were just about all I had left. Although we’re in different places with our children, there are so many times I read your posts and say “I was just thinking about that the other day…”. You write about what so many of us are feeling, and I know it’s helped me to know I’m not alone with these thoughts. Thank you!

— added by kim mccafferty on Wednesday, February 22, 2012 at 9:30 am

hi susan, i read your book ‘making peace with autism’ i couldn’t put down. i have a daughter who is 11 yr old with pdd. she has been aslo low functioning she plays with baby dolls says baby talk, watches preschool age shows.i also searched for school placements she was in regular ed now to out of district. her behaviors bring aniexty at times she just flips and she zones out so she’s hard to calm down unless food which is her comfrt n coping.i ‘m so glad i read your book it helps me now i’m not the only person dealin with these behaviors or a child with autism.i have to defend her in community when kids or parents make comments what is wrong with her.i try every day to include her with her sibs but she has a difficult time .i want to say thank u.

— added by shannon on Tuesday, February 28, 2012 at 11:35 am

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