Revisit Those Memories
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 d...
Source: Susan's Blog - November 29, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
I Recommend Time Travel
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 d...
Source: Susan's Blog - November 29, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
11/29/17 call your senators!!!!
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:
Increas...
Source: Susan's Blog - November 29, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Muzzle the Puzzle
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 ...
Source: Susan's Blog - November 27, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Stop talking about him in front of him.
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 hat...
Source: Susan's Blog - November 26, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Taking Nat At His Word
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 wr...
Source: Susan's Blog - November 20, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Senseless, Powerful Human Love
After all these years as a mother, I’m trying to understand the nature of my strong attachment (helicopterish, tiger mother-like) to my children. They are not babies, after all: they are 27, 25, and 19. So — I don’t think my overweening bond is about being Jewish, or any other religion or culture. My own obsession with their darling-ness aside, I do wonder if attachment like mine is a shared human trait, an evolutionary outcome that guarantees mothers will remain emotionally attached to their offspring — in order to see them into adulthood and parenthood. Ideally, the preservation/promulgation of th...
Source: Susan's Blog - September 27, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Thoughts on Facilitated Communication, “ FC ”
Ned came with us (Nat and me) to our second Facilitated Communication session today. Although I have some doubts about what it all means, if there is even 10% of Nat’s “real” thoughts in what he typed, then I can’t even… I can’t bear having waited this long to try it. All day my heart’s been hurting, but it is pain that is a complicated mixture of every color, every temperature.
You have to see it to believe it. And even then you might not. But I am not saying I don’t. I went in with an open but highly focused, discerning mindset. The way it’s done is that the in...
Source: Susan's Blog - September 6, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
But is it okay?
Every time I drop Nat off at his group home my body goes on extra alert — trying to sniff out anything untoward or bad or depressing or neglectful or dirty. I never find it in this place. Okay, the television is always on. But ain’t that America? You choose the technology to sink your face into all depending on your age, your social class. So eggheads like Ned and me are always facing open laptops. Millennials like Ben and Max are always on that phone. Slightly older people I notice have iPads so they can read with huge letters. And group home staff often have televisions on. Ain’t no crime.
So I stand th...
Source: Susan's Blog - August 7, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Playing for Real
There are aspects to taking vacations with Nat that are unchanging. Because of his chronic anxiety there is always the need to think ahead and to plan so that he won’t be upset. There is always the spectre of him getting upset in the worst possible places like the beach or restaurant, a store. Even when he’s not upset he’s very pronounced in his actions, his activity, he invites staring. Yes, it’s wrong for people to stare but they do. So for all of his life that’s one of the biggest things that has not changed; my discomfort of being with Nat in public.
My discomfort does not overshadow my jo...
Source: Susan's Blog - July 26, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
The Third of July
July 1 was my wedding anniversary. July 3 is an anniversary, too — but a terrible one. It’s been exactly a year since Nat came home with a big bruise on his chest and we then discovered he had fractured ribs. The state investigation yielded no clear findings, no evidence of abuse or neglect. We will likely never know what happened. And we have to grapple with the painful fact that Nat could not or did not tell us that he was in pain.
I had him come home last night for a special cookout because I knew he was going to be at his day program today and then at his group home for the Fourth. They are planning a cook-...
Source: Susan's Blog - July 3, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
A Return to the Institutions?
Today on WBUR.org, (Boston’s NPR station), I wrote about the potential devastation to access and community inclusion of guys like Nat (people with developmental and intellectual disabilities) if the current GOP healthcare plan should pass. You can read it here. (Source: Susan's Blog)
Source: Susan's Blog - May 3, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Little Red Motherhood
Nature is red in tooth and claw. — Alfred, Lord Tennyson
Mothers are even more. — Me
Still not over it. Nope, so don’t expect that I’ll move on. Or rather, it has morphed into something else. Action. My grief over what happened to Nat — maybe it will always be with me because of the responsibility I bear. Because I failed to keep him safe. Twice. Yes, there was a quieter horror, lower down, in the shadows of an X-ray. There lurked the other, older healed broken rib.
No, it was not my fault, of course not. I would rather die than hurt Nat. Any of my sons. Take the bullet, no question.
We don...
Source: Susan's Blog - April 27, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Nat Is Okay
I have been having a very hard time managing my feelings about what happened to Nat in July. I think about whether he is happy or okay very often. I have nightmares. I talk about it too much. It’s because I feel that I didn’t protect him well enough and I don’t know how to move forward. But even more, I am so worried about how Nat has internalized all that happened to him. How does someone who has a communication challenge like his talk through and make sense of trauma?
So I went to see my old therapist. She had the idea that I make a Nat book for him, just like I did when he was a really little guy and n...
Source: Susan's Blog - March 9, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
Go Ahead, Laugh in My Face
Sometime during the last year or so I discovered that Nat had started making this new face, where he drew his lips together almost like a kiss, and scowling a little, he’d tilt his head downward. When it first happened I was alarmed because — why did he feel he had to stop smiling or whatever he’d been doing? Had someone in his life been chiding him for laughing too much, being silly? This is where my mind goes, automatically looking for that hidden evil person in his life, mistreating him and no one knowing about it. I have every right to go there, especially after this last summer when he came home with...
Source: Susan's Blog - February 15, 2017 Category: Child Development Authors: Susan Senator Tags: Uncategorized Source Type: blogs
