Susan's Blog

Sunday, November 22, 2015

One Small Step For Everyone Else, One Giant Leap For Nat

There we stood, Ned and I, just behind the line of the football field at Nat’s Special Olympics championship games. We were frowning a little, then smiling, then grimacing. We had layers and layers of sweaters and coats on to guard against the raw gray air. This wet cold seeped into every thing, even though it was not raining.

Play after play Nat dropped the ball or didn’t even try to catch it, walked slowly up and down the field, and stayed away from the other team. He’d be subbed out and would smile, so I knew he was enjoying himself. But he sure does not understand the game, or what he is expected to do with the ball on any level.

Ned’s and my frustration stung as we watched his one-on-one — a unified (i.e., non-disabled) player — just kind of talking to him in a normal voice, too many words. Might as well have been French or Hindi. Nat just will not process that kind of stream of sentences, it just roars on past.

I don’t want to feel this way, this tiring tug downward. But I did. One of the parents kept catching my eye and splashing me with sympathy. I gritted my teeth and gave nothing back to her. I. do. not. want. your. messy. pity. Pity can sometimes make the other person feel shame. God damn her for making me feel shame.

Then it dawned on me. Nat is pretty much the most disabled person on his team. Yes, it’s true. The rest of them can talk, can understand the basic rules, and most importantly: they understand what they are supposed to do and they want to do it. Their comprehension buoys their motivation.

I realized next that Nat is likely among the more disabled people in Special Olympics. The diagnosis of Intellectual Disability can mean you are only slower to process, or perhaps your language is affected and hard to understand. Maybe you have Down Syndrome and so much of your disability is physical or about delays. But your social powers in all of these cases are still intact. I don’t know enough to state this empirically but I know what I see. Even those who appear very very disabled in how they move or how their faces are arranged, or how they sound, they are still able to be a teammate and they know there are rules and roles in the game. I don’t think Nat is at that level.

For some time now, I think I had forgotten about Nat’s disability. Not on the surface, but kind of deeper down. You would not have noticed. The slogan “Presume Competence,” puts forth an attitude I’ve long worked towards. Now I’m wondering if it can go too far. All Nat’s life, he has tried and tried to do what is asked of him, and he has learned over long periods of time what to do in so many areas of his life. It is not about his ability to actually do the thing, execute the task.

Nat’s disability, the black hole at the center of it, is that he does not realize his part in things. He does not realize what is behind getting the laundry up from the basement or unloading groceries for me or going on a walk to a favorite destination. What is behind these things is will. Free will. Nat does not understand in the most basic way that he can be the origin of an action, a conversation, a want, an idea.

He does not know that he is the master of his own life. Nat’s disability lies in a pathological passiveness. Not laziness, not intelligence, not physical know-how. But generating original action. That is what he struggles with the most. So it really hurts when people say, “Maybe you should show him how to type.” Or “Maybe stop prompting him.” Or “put up pictures and lists telling him what to do next.”

It hurts that people do not understand my biggest failing as Nat’s mom: I do not know how to teach him how to do things for himself because the very nature of teaching him what to do is that he learns it still hooked to my teaching role. He does not detach his own desires and acts of fulfillment from me, and others. It is a terrible paradox. I cannot say, “Nat if you want to eat, you can eat,” because to him that means “Nat, you can eat now.” The “if you want,” is cloaked behind something in his mind. It’s just like Who’s on First, but it’s not funny. It makes me so sad. It’s like when I could never teach him the correct pronouns, either, for similar reasons. I can’t say, “No, Nat, it’s not me who wants it, it’s you!”

“You want it.”

“No Nat, you mean ‘I want it.’ You, not me!”

“You want it.”

I want it. To get better. But will it? Can he make this leap, across that giant field?

Does he have to? If this is his disability, this is his disability.

But I think he wants more power in his life. I think he knows that he is on the sidelines, even in the game.




You, in my opinion have no failings, or shortcomings as a Mom.You are one.I feel you. In a desperate struggle to have our children be all that they can be, we often do for them.This is the ultimate dilemma of all Moms.Don’t. Second guess yourself, you are an inspiration.

— added by lisa on Sunday, November 22, 2015 at 4:19 pm

Passivity is a difficult issue. In my experience, well meaning people including myself or in school, day programs, recreational programs etc… may assume more of a decision making role for a person or group of person’s with intellectual disabilities than is actually needed due to lack of awareness, “because this is the way they have always done things” and on and on. It takes a concerted effort to undo this mind set when a person is older, but I believe it can be done if all environmnets work together. Putting it in as a goal in the annual Person Centered Plan may be one option to get all persons working on the issue together.

— added by Rowena Beatty on Sunday, November 22, 2015 at 6:56 pm

Start letting Nat make choices by putting two items in front of him that he likes. Let him choose which one to take. This will help him understand he has some control and can make decisions. Jeremy has had “choices” as a goal in his IEP for years. It took some time though for him to understand he did not have to pick both. Never give up, my friend.

— added by Candy on Sunday, November 22, 2015 at 7:21 pm

I’m not giving up, it’s the opposite. I do give him choices that way all the time. I’m saying something deeper than that, that I see his severe disability is that he cannot decide things about himself on his own. OK, not yet. Jeremy and Nat went to the same school, after all, I know all the tricks. But what I’m lamenting is that he still won’t know he can decide which two items in the first place.

— added by Susan Senator on Sunday, November 22, 2015 at 7:24 pm

Do you mean an ability to assert himself? I think we all have an ego, it’s innate. It’s how connected we are to others that gives us the need to assert. I think Nat will do that if he truly wants something.

— added by Candy on Sunday, November 22, 2015 at 9:11 pm

I guess I have to think more, Candy, to see if I can articulate it better. He does so much lying around, waiting, sitting, watching, closing his eyes when you look at him. He gets into bed, he does not even try to eat breakfast until asked. It may be different when he’s with John, but I don’t see that.

— added by Susan Senator on Sunday, November 22, 2015 at 9:17 pm

Keep sharing. We all can relate. Hugs.

— added by Candy on Sunday, November 22, 2015 at 10:10 pm

This made me cry my eyes out, because it’s so true. I’ve had that feeling so many times watching Janey—that despite appearances, she is the most disabled person I’m watching. I’ll be honest and say I get tired of presuming competence. It feels like it sells Janey short, all the effort it takes for her to learn. And I get very tired of people not understanding that some kids with autism also have pretty significant developmental disabilities. And of advice that I know won’t work. I thank you for your honesty.

— added by Suzanne on Monday, November 23, 2015 at 6:21 am

I understand this–I remember the first time I saw my son in a group and it hit me that he couldn’t say that he was thirsty, couldn’t even reach for the pitcher of water in front of him. He lacked the most basic understanding of cause and effect, or a sense that his body was his own, existed in space, and could have any intentional impact on his surroundings. That changed as he aged, but I don’t think it was because we gave him choices, per se, it was just his pace of development.

— added by Kate on Monday, November 23, 2015 at 7:30 am

I get it… and it’s very frustrating.

I know how smart he is, I have paper too that tells everyone how smart he is. He can play the piano and the drums. He can use an iPad better than I ever will. Makes amazing graphics on the DSi and stop action videos on the 3Ds. When he makes his lists on the computer he types faster than I can. Emotionally he is normal. No meltdowns, just the 7 yr old stomp and whine – he can be reasoned with, unlike the “passing for normal” HFA one.

The words have completely vanished – he’s 2 weeks shy of 14 so I’m guessing it’s puberty since we don’t appear to have mood swings – and he simply will not talk. Not even a yes or no.

In a controlled space – home/classroom – he navigates it with ease. He knows the “rules”, he follows the social stories (school) but take him to S.O., the mall, the pool…. and you want to pull your hair out. That’s when you remember the diagnosis reads “severe, non-verbal autism”.

— added by farmwifetwo on Monday, November 23, 2015 at 8:16 am

I can feel your struggle, I am not the parent of a child with autism, but I know so many parents who are and I know their children. I’m on the fence too, about “presume competence”. Not in every area, but in many, in much the same way that there are things I don’t want people to presume competence about me. Learning and brains are all different and the way they learn are really individual and specific. Initiation is one hallmark of many with autism, some get past it, some don’t. But it doesn’t mean that they don’t enjoy and master a lot of what they do. Nat will master steps along with way, and each step is HUGE! I say good morning this guy I work with every day and he always echos what I say I say “Good Morning S”, he says “Good morning S” back. I went back to my training and started saying “Good morning S” and immediately before he could answer “Good morning Michele”. He would echo only the last part. I slowly faded it and now he says “Good Morning Michele” every with no verbal cue at all. Sure, I look at him and that is a prompt, but he says it with the biggest, happiest smile and totally gets that I am me and he is he. Nat is a lucky young man.

— added by Michele on Monday, November 23, 2015 at 11:59 am

I too get what you are saying. It is what has been making me very concerned lately as well for my child. I am convinced a lot of the therapy over the years has done the opposite of what was intended and created learned helplessness. I know a lot of people who have had the same concerns and issues with their kids and have left ABA and became trained in RPM (I read the books by Soma first and they are very well thought out). It has really made a difference in the communication and fluency many parents report. I am next. I’m done with ABA!

— added by CJ on Monday, November 23, 2015 at 5:13 pm

I have a question Susan. You say he does so much lying around, waiting, sitting, watching, not eating until told, etc. Has this presentation always been typical for him or did he used to display more independence in these areas?

— added by ? on Monday, November 23, 2015 at 11:47 pm

It varies, he has had phases over the years. Other years he has been more active, but anxious,too. Now he is not anxious, but very watchful.

— added by Susan Senator on Tuesday, November 24, 2015 at 6:04 am

Now at age 18 he has become more involved in making his own decisions. He choses what to wear, fixes his own breakfast, he and another boy at school have become friends even though neither of them can talk. Funny that when they see each other at the mall neither will say hi
At special Olympics he swims but does not understand about competition. He will do summersaults in middle of the race
He has a good time and isn’t it all that matters? Many kids with autism don’t even want to participate. A friend of ours brought him a taco not knowing his picky food choices. He spoke a coherent sentence, “i don’t want that”. Anyway, as he gets older he will make more choices for himself
Trust me because he is a teenager.

— added by Joan on Tuesday, November 24, 2015 at 10:19 pm

The very nature of autism is not generating original action. You will not be greeted with “hi” ot “good morning.” Some things will seem robotic in that he learns to say these things but he is not really interested in such social niceties. When he wants to show affection he will fluff the back of my hair. About the intelligence. There is a difference. He is not more intellectually disabled
He may not understand the concept of competition because he doesn’t really care. Remember he is smilimg so he is enjoying some interaction. That is the key. He learns quickly those things that he is really interested in. He is a person who lives within himself which makes him have splintered skills.
Autism ID is different than other forms of ID. Not worse but different. Actually he is smart. He loves to travel and looks up the places he has been on the computer even from when he was 2yrs old reliving the memories he has of that time in his life

Autism has been given a bad rep but in reallity he is a warm, funny, loving individual who faces challenges that come natural to others.

— added by Joan on Thursday, November 26, 2015 at 10:27 am

You’re very kind to be so reassuring. But each autistic person is a different person. Mine is 26 and different now from how he was as a teen, in many positive ways. But I still have my own feelings about his progress and how little I feel I can do for him.

— added by Susan Senator on Sunday, November 29, 2015 at 2:34 pm

I don’t believe you can generalize about autism this way. I think there are probably many with autism who can generate original action. I do know what you’re saying about ASD having a bad reputation, though.

— added by Susan Senator on Sunday, November 29, 2015 at 2:36 pm

I can only comment about my personal experiences with my son who happens to have a very charming personality. In his life he has done so many good things
He is also very hard working
And has a sense of humor and some of his antics through the years we have to laugh
I didn’mean to generalize. I only meant that autism can can play a part in social situations.

— added by Joan on Tuesday, December 8, 2015 at 10:24 am

Oh, I’m sorry if I was harsh, I didn’t mean to be! Thank you for weighing in! 🙂

— added by Susan Senator on Tuesday, December 8, 2015 at 10:33 am