Susan Senator

In some people with autism, there can be what appears to be an acquisition of skills and then a loss of them. People have asked me over the years if Nat lost skills. Tough question. My feeling has always been that skills showed up and then became quieter while he was working on other skills. I never believed that they disappeared entirely. He has always developed skills and returned to them. His development has not been linear, however. It is more like a series of loops but always a growing chain of them. For example, at certain “age-appropriate” stages, he has rejected typical toys or activities. Lined up by didn’t play with Fischer Price people; mouthed a ball; stared blankly at T-ball. Just lay there on his back in a pool during Mother-Infant swim class. Now I know: he never cared for those kinds of toys, and baseball just leaves him cold. But he does love basketball. This happened at age sixteen or so. And now his swimming abilities are legendary.

Development happens at any age and just keeps on happening. You must keep your eye on that truth if you are an autism parent. Try, try to return to those earliest days and see your child back then. See how much he has grown and changed and has become colored in. Go back in time and find the joy you had to have felt at this child of yours. Or see it now and rejoice in his uniqueness, feel that in your heart there is no one like him and yet he is also Every Baby.

It is infinitely interesting to me to go back in time and look at Young me with Baby Nat. Despite remembering so much sadness at not understanding my budding Autist, there was so much happiness, too. I wish all of you had journals to look back on, so that you could feel these blissful feelings you must have had with your infant autistic baby.

January 3, 1991, Fourteen Months Old:

We watch Nat in his crib at night. I really could stand there forever and the longer I do, the more I feel the need to laugh. It’s an odd kind of laughter that makes me shake and also feels close to crying. I have discovered this feeling in relation to Nat. I think it is what bliss feels like. That lump in my throat.

Nat sleeps in such a cute manner. His breathing is little puffs in and out in very small degrees. You can tell how small he is from the little breaths he takes.

His eyes are very puffed and round when closed. His whole forehead looks even more rounded in sleep. His candy mouth is slightly open and utterly at east, surrendered to his happy sleep. His little rounded arm is often close to his mouth with the thumb sticking out as if he could suck it at any moment. We hear him downstairs; suddenly there will be a chirping from the automatic sucking.

Best of all, his littlefoot sometimes escapes the blanket and hangs out from the crib, between the bars. It is all of 4 inches long, but chunky.

And of course the smell that lingers over the crib is pure perfue. And it is not merely baby powder and scented drawer liners. It is him; his essence, released during the peace of sleep, and lingering above him like a sweet cloud.

April 29, 1991, 18 months old:

Before I forget! Some cute/great things Nat does.

1) “sshh — aaah!” Screams and then says “ssh.”

2_ “Tee” means he wants to brush his teeth.

3) “Ah-hah” he wants something, probably a drink.

4) Offers up his arms to me to be picked up.

5) Delights in seeing his stuffed animals sitting in a chair, on the couch, etc. Fuzzy Lambkin, Russ, Dakin, Horsey Guy.

6) Calls cat “cah”. Calls dog “cah”. Calls Teddy Bear “cah”.

7) Says “Ma-ma, Ma-ma, Ma-ma” in a little soft singsong. Ned is “Da Da Dah.” Melts in your mouth.

8) Does “Eensy Weensy Spider”: Waves his arms in a circle saying “ahhh derrrr ahh.”

9) Yells and shouts a complete range of noises and sounds like a language but are not.

Finding these journal entries are like when the color comes on in The Wizard of Oz.

Here is an important (abridged) message from the Autism Society of America which basically BEGS you to call your Senator and tell them “NO” on the Tax Bill

CALL 202-224-3121

Background
On November 17, the House of Representatives passed its version of a tax bill.  The Senate Budget Committee passed their version today. A final vote in the Senate is expected Thursday.  Both bills are extremely harmful to people with disabilities. A conference committee may have to work out the differences between the bills, meaning that provisions in either bill could end up in a final tax bill.

WHAT IS IN THIS BILL:

• Increases the deficit significantly to provide tax cuts that disproportionately benefit the wealthiest Americans and corporations.
• Leads to cuts to Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities in order to reduce the deficits and debts incurred by tax cuts.

The Senate bill ALSO includes a provision to repeal the individual mandate to obtain health insurance. The individual mandate is a central part of the Affordable Care Act (ACA) which greatly benefits people with disabilities by eliminating pre-existing condition exclusions, banning annual and lifetime limits, prohibiting discrimination based on health status, and much more. Repealing the individual mandate will:

• Results in almost 14 million people LOSING HEALTHCARE COVERAGE (according to an analysis by the Congressional Budget Office (CBO)).         
• Increases health insurance premiums for those purchasing coverage on the exchange by at least 10% for the unforeseeable future (also according CBO)·         
• The CBO analysis also says the repeal of the individual mandate will save approximately $330 billion (because of the large number that will not be insured) over ten years.  This money will be used to pay for a making the corporate tax cuts permanent and to cut to the tax rate for corporations and individuals on the upper income scale.
• *****According to the Tax Policy Center, the Senate plan shows that 87 million households earning less than $200,000 will get a tax increase under the plan*****

We have a VERY short timeline to stop this very harmful and unpopular legislation.

TAKE ACTION: CALL 202-224-3121

• Contact your Senators NOW. We only have days to defeat this! Autism Society is co-sponsoring a national call in day on Wednesday, Nov. 29. Call your Senators.  Use the Capitol Switchboard number 202-224-3121 and ask for your Senators.
• Participate in a Tax Plan Protest Event.

WHAT TO SAY

• I am your constituent and a member of the Autism Society.
• *******Please vote NO on the Tax Cuts and Jobs Act.*******
  (That is the most important thing to say. Say the rest if you can but be sure to say VOTE NO ON TAX CUTS)
• This tax bill will hurt people with disabilities and their families.
• Do not repeal the ACA individual mandate.  This will further destabilize our health care system, raise premiums, and could lead to my family losing their health insurance.
• We cannot afford these tax cuts that disproportionately benefit the wealthiest Americans and large corporations.  
• Tax reform should not be rushed.  People should have time to understand the bill and how they will be affected.
• This bill will lead to fewer jobs for people with disabilities.

Maybe you noticed, maybe you missed it. Something is different on my website. The puzzle piece is gone. Yeah, it was only like a glass puzzle piece — see-through and benign — but still. A marker for those looking to think about autism. It was there for the last twelve years, since the very beginning of my blog.

This symbol was to show people that this was an autism blog, even though I have always insisted it was simply my blog. I would write about anything I wanted. Bellydance, love, bike rides, writing, teaching. My two other sons, Max and Ben. But I don’t write about any of that all that much, it turns out. It pretty much is an autism blog. I don’t feel that I’m allowed to write about Max and Ben, really. It is embarrassing having them (maybe) see how I feel about them. I still do it, though. I need to. But I feel like I have to temper such declarations of motherlove, or be careful disclosing anything too much their own. I post on Facebook how I feel about them, do the usual brags we all do on Facebook, little sentences couched in humble, seemingly-innocent wrapping. Soften the blow of our happy lives with that cushioning disclaimer of “I don’t mean to brag but look at this beautiful/great/funny/serious/smart thing I did/found/thought of/hate/love.”

(I really hate Facebook. But I truly see its benefits. I’m gonna use it for what it’s best at. But that is not what this blog post is about.)

So why can I write about Nat? Well, I just feel that I can. Why? Because he probably won’t ever know. How shitty is that? Welcome to my shitty blog, which is a bit about autism and all my feelings about it. It just is.

So I’m redressing this somewhat by at least no longer claiming so falsely that autism is a puzzle, that my oldest son is a question mark. You know what the question mark is in this life? EVERYONE. I don’t understand why people do what they do, so why should Nat? Everyone else has developed layers and layers under which they can hide their confusion, their mixed feelings. I guess Nat has developed his “self-talk” as his layer, as well as a comfort. But he’s not to be looked at, looked down upon, as a puzzle! That is just so offensive.

It’s the rest of us who are puzzles.

What is it like for Nat to have people talk in front of him about him? Even when they are being kind, loving — wanting to know what this gesture means, what is he trying to say — it makes me so sad for him that others talk in front of him. It makes me angry at myself for not being able to break apart from the interaction and tell these others that they should not talk about Nat in front of him; they should talk to him. What is wrong with them? What is wrong with me that I cannot stick up for him when I should? I’m so much more worried about destroying the otherwise pleasant interactions in the room? I hate myself for not being able to say it.

Sometimes I do, though. Sometimes I say, “ask him.” Sometimes I say, “leave him alone.” Sometimes I say, “he’s right here!” and I smile to soften it, to not embarrass them too much.

Other times I lead by example. If they ask me “blah blah blah why does Nat blah blah blah?” Or “Would Nat like blah blah?” I say, “I don’t know, hey Nat! Do you want blah blah?”  Or if Nat cannot answer because somehow the words are stuck somewhere — I hate sticky words, I could just kill them — sometimes I say, “I think you probably don’t like that, Nat?”  I go with my instinct of what his answer might be, and I include him that way. It’s the best I can do.

Why can’t others do their best? Why are people still so clueless about this? Is it because I do not explain this every time? Why is it so hard to act in the moment, particularly when my own dear son’s personhood is being distorted?

I look at Nat when he is not singing, when he is not the star up on stage — I haven’t written about this, but he has joined a band and now sings! He is so happy up on stage. Never happier. This band is like Special Olympics is for him — it is a big beautiful world that opens wide for him, accepts him, teaches him even more, and then is awed by him. This is the opposite of what we get from the others mentioned above. Those others do not know the Nat on the stage. They don’t know his sharp bright smile, his intense focus, his adult body language, his charisma. His bandmates do. The other parents do. The teachers do. The audience does.

But what about the majority out there who does not see him sing or swim? They see my pictures of him, if they even give that much of a shit, but is that enough? Evidently not. They still must patronize him. They leave him out of his own conversations. They don’t see him. They don’t know him.

This ignorance, this dismissal is the very thing that first forced me to write about autism. I was writing about Nat because I knew about Nat. I knew how much real human space he takes up in this world, and I know how some do not see that, they don’t see him. It kills me that they see so little. That they see a two-dimensional Nat. I write in the hopes of making Nat and others like him visible, real, human, three-dimensional. I write so that you people out there who speak in front of him like he’s not here will open your eyes and maybe shut your mouths. Let him speak. If he’s silent, then he’s silent. If his speech comes through his hands, his gestures, his expression, his closed eyes that just cannot look at you the way you need him to.

Like Nat, I just cannot always speak up. So I need you people out there to do the right thing and talk right to him.  Nothing about us without us? Nothing about us without us especially while we are right here with you in the room!

Oh, and one more thing: try asking him about his day, his jobs, his band, his favorite activity. Wait for an answer. Repeat if you don’t get one. But please, include him.

Where I last left off in this blog, we had dipped our toes into the world of Facilitated Communication. Nat had gone to two sessions. He’d typed with the therapist’s hand under his wrist, his pointer finger poised at the screen and the stuff that came out was extraordinary, breathtaking.

But in the end, I just could not believe in it. At the time, I wondered if I was betraying him, if this was his True Self, finally coming out. But the sentences just did not sound like him, other than in one or two instances. Yet I was to believe that just because a therapist (a person he’d only just met) supported his wrist in a particular way, that he was now typing what was in his soul, not simply the usual words shredded by his tongue. Never mind that he types independently on Facebook. No, this new approach was supposed to override all of that, as if all of his previous struggle to speak and communicate with us counted for nothing. The sentences were so long, not his clipped, economic use of only the necessary phrases. The first revelations were about how he loved me and how his brain was all there.

Rather than making my heart soar, this was what made me have my doubts — not about his brain, or his love, but about Facilitated Communication. Why in the world would Nat think I needed reassurance — about his brain or anything else? Our relationship is healthier than that. We are bonded unalterably. We take our love for granted. No, he does not say “I love you,” of his own volition. So what? Why should I be so vain as to need to hear that from his mouth? Parents are supposed to be there for their kids, not the other way around. My two neurotypical sons rarely just blurt “I love you, Mom,” except maybe on my birthday or if I’ve been sad about something in relation to them. It’s a high when they do. But it’s not my focus. Hearing “I love you, Mom” is definitely soul-satisfying, but the more important thing is how are they doing/growing?

And from Nat, who has a hard time speaking: I cannot expect “I love you” out of him, except in echolalia.

And as far as believing in his intelligence — I have nearly two decades of written evidence that I believe to my best ability that he is indeed competent and comprehending. Original, unique, loving, beloved. I don’t need a typewritten intentional testament to believe in Nat.

****And if you are using FC and feel good about it, then take that and run with it. ****

But now I gotta ask, why in the world would I disregard all of his labored utterances as well as his noisy silence out of some need to hear him sound like a Hallmark Card Man? When in fact, Nat is always communicating, always telling everyone what’s on his mind–it’s just that I don’t always know what he’s saying. But if a human being sits there and speaks in sounds that make him smile and laugh, he is indeed sharing with you that something is making him feel happy. If he sits there and then jumps up and starts flailing his arms and walking around really fast, you can assume that something’s on his mind that he needs to express. And so he is. Or he needs to express it stronger, so he finds another way. Sometimes it works, sometimes not. Okay, we are all works in progress.

There are at least three ways that Nat has always communicated: the tuneless phrases that answer our questions and tell us not to deviate from our promises, our schedule. The singsong self-talk that I believe is compressed or elongated meaningful words that he does not want to say directly, or cannot say directly. (“Mah-ee” is Mommy. “Wheels,” might be wheels, but it might be something else because it always makes him laugh.) Finally, there are his physical actions, the way he listens with his whole body when we are talking about events to occur. The way he jumps up to do any favor I ask of him.

I felt so guilty at first for having doubts about FC. Here was Nat, typing sentences, using “you” and “I” correctly, writing about the past, the future. Using metaphors. How could I not support that?

I asked him if he wanted to go back. But after all the wonder we expressed at what he’d written, and all the praise, Nat took no time at all to answer, “NO.”

And that’s a word I can believe.