Susan's Blog

Monday, December 18, 2017

The Boy Who Sang Like the Wind

Once upon a time, there was a very young mother with a tiny baby boy. At first the boy was happy, but he became very sad and quiet at times. The very young mother, who loved him very much, was worried and sad and did not know what to do for him.

She asked her mother what to do. “He’s beautiful,” her mother said, for she could see all of the boy’s magic, but she did not know how to summon it. “Give him other children to play with and you’ll see, he will be happy once more.”

So the very young mother went out to the garden where other little boys and girls were playing. The boys and girls were so happy. Their smiles ran free and light like wet watercolor paint. But the little boy was different. The sad little boy would not play with the others.

The young mother thought she should keep him safe in their little home with her.

But the little boy became more and more quiet. The boy’s face was so beautiful, his hair shone like gold, but the mother worried because she knew that her son did not understand the world he was in, and that’s why he had gone quiet and still. She asked her wise old grandmother what to do. “He’s beautiful,” the old grandmother said, for she could see all of his wisdom but she did not know how to bring it forth. “He just needs you to help him find his voice.” But though the very young mother played with him all day long and sang to him at night, nothing would take her little boy out of his silence.

The very young mother took her little boy to the wise man, who said that the boy was indeed growing differently from other children. And though he was the wisest man in the town, he still could not tell her what to do for him, except to get him to a school.

The young mother took the little boy to school. By then her heart had become as deep as the ocean, dark and lonely. The only thing that made her happy was her little son, and yet he had no smile.

The teachers were very kind and learned women, who showed him pictures, letters, numbers. They read him stories. They sang him songs. They threw balls to him. Eventually, bit by bit, the little boy learned how to smile there at the school.

For many years the boy was able to make his face smile, and he could even make sounds and words that pleased other people. But his mother, no longer young, knew deep down in her heavy heart that his real smile, his real voice, was deep inside him. She did not know how to make it come out.

Then one day the mother heard something strange. It was music, a song she’d never heard before. It had a rushing sound, like summer rain. She followed the sound and there she found another little boy playing music on a violin, with his father. This boy was like her son somehow; his smile was not like the smiles of other children. His smile was not for the outside but for the inside. And the mother had never seen this before, but still she knew that it did not matter — because it was a real smile, nevertheless.

She thought this was because he could make music. She sat there listening and listening to the song of the musical boy and she felt the ocean inside of her rise, up, up into the sunlight. She hurried to ask, “Can my little boy play music sweet like the rain, too?” And the father said, “Oh, yes, I’m sure he will like it.”

The father told her to take the little boy to a forest clearing where some young men and women sat in a circle playing music into the night. All around them were instruments of all kinds: drums, pianos, violins, guitars, and even some that the mother had never seen. The song rang out in all kinds of colors and sounds. At times the mother felt she could taste the music. And then, when they finished their song, the young musicians looked at her silent little boy, and they said, “He is beautiful. What an amazing light he has.” And they gave him a drum.

The boy played the drum next to the other boy and their music filled the forest. Their music was the forest in a thunderstorm. The mother watched and sometimes she thought she saw a tiny smile tugging at the corners of her son’s mouth. She brought him back to the forest every day and watched him from the shelter of some old beech trees.

Then there came a day when the boy put down the drum and stood up. He opened his mouth and sang his song, from deep within mountain caves. His voice was like none other she’d ever heard. It was tuneless, like the wind, and yet it stirred the leaves with its great power.

As the boy sang, the deep sea made its way out of her, through her eyes, and she cried and cried while her boy sang the song of the forest.

And when the boy finished that song, his smile broke free at last. It shone from his hair, his eyes, even his teeth. His hands smiled, too, opening and closing with a great energy. No one had ever seen a smile like that, because it had come from so far inside that it shone like diamonds from the deepest mine.

The mother knew it was time to leave, and she made her way back to her hut, her heart light and free. Now, at last, she could live out her years in peace.

And if she listens carefully, even in the deepest darkest night, she can always hear her son singing with the others in the forest, bringing the wind, the rain, and the sun.

Friday, December 15, 2017

Subtle and Overt Exclusion of People with Disabilities

At some point, I remember the joy I felt when I realized that I could drop Nat off at a given social group outing or event without staying, without a one-to-one. To be honest, my happiness was in part because it was easier for me, but I believe that Nat also enjoyed the freedom from the buffering aide. (Ahh, that universal burning resentment we parents and self-advocates feel about having to worry about the one-to-one accommodation for the extracurricular activities! Particularly joining in the “Neurotypical People” social activities. It’s almost always on us to find someone who understands our guy and it’s almost always up to us to pay for this accommodation. Only occasionally does the organization provide and pay for the aide but it is rare.)

I’m not saying Poor Me here. This is not about any sort of self-pity about all the stuff I gotta do as an autism parent. This is not on the autism. Or Nat. I’ll do anything for Nat, I’m his mom, that’s the contract I signed on November 15th, 1989 — no ink, just my soul. No, this is on the organizations who should follow the ADA, Americans with Disabilities Act of their own volition, or even better: simply provide it because they want our guys to take part alongside their peers, for God’s sake.

Why are we still in this phase of social cluelessness? I’ve been fighting this fight for Nat ever since he started having social anxiety and struggles to adapt to this stupid irritating sensory overload we call The World. Since he was three. That was 1992, folks.

There are still times when Nat can’t attend an event or outing. No one says directly “Oh he can’t handle it.” No one would dare. Well, actually, a few times they dared. And I am going to call them out right now: CASE Collaborative in Acton, Massachusetts did, and they are a special needs school program. Certain Speech/Language organizations did. Our local elementary school did (the principal said, “Oh he would be so bullied here,” in such a concerned voice. I kid you not). Jewish Big Brother and Sister did. They deemed Nat’s needs too intense for them. These places always claim they didn’t have the ability to train. Or the resources.

An elephant — particularly a mother elephant, like Dumbo’s mom who literally brought down the roof on those bastards — never forgets.

Are you — special needs organization, public educational institution, specialist, sports venue, theater — inclusive — or not?

If you don’t include, don’t you dare put it on him, if you can’t plan ahead for the appropriate accommodations. You are breaking the law but special needs parents or self-advocates might not have the resources, time, energy to take you to court.

Where is the Special Needs Fairy Godmother when we need her?

Excluding Nat usually happens in a more subtle manner. I learn about the circumstances of the particular event. I hear a few warning words like “hmm, is it for him?”  And then it is up to me to decide. Yes, it is up to me because if I ask Nat he will say “yes,” even if he is not in a place where he will be comfortable with the way the event has been structured. I know him, I know he will not think ahead about the parts he won’t like — he is just like me in this way. All I think about is, “Yay! I want to do this!” and I rush in and then — whoa, I can’t handle this.

Sometimes exclusion isn’t even about needing a better ratio of staff to participants. Sometimes the transportation will be a problem. For example, Nat will get anxious going somewhere in someone else’s car. Sometimes. So depending on how his anxiety has been, I might decide not to send him out this way. Or sometimes the problem is that the transportation will be making an extra stop. Nat hate extra stops. Or circling for a parking space is too hard for him.

I believe that organizations planning events must think ahead — ask the self-advocates or the caregivers ahead of time — what the issues might be and plan accordingly. And then do it. Pay for it yourself, don’t put it on the person-to-be-included. Or compromise, split the cost. It is as simple as that. Inclusion does not mean allowing people with disabilities to participate at your sufferance. Inclusion means being a team of equals, figuring out together how this thing can happen happily.

And let me just add that sometimes people are completely sincere in wanting to include and they are beautifully receptive to input. You can tell when it’s going to work. We very recently had a very good experience with a lot of hard work on both sides figuring it out and making it happen. I am so grateful for the mensches of this world.

But until you learn how to do this, you will not get to be with this guy. Your loss.





















Friday, December 8, 2017

Sunday Boston Globe 12/10/17

Enjoy my latest column in the Sunday Boston Globe Magazine online now!

A Ziegfeld Mom

“I’m a Ziegfeld Girl,” Barbara Streisand as Fanny Brice says to her reflection in the mirror in the wonderful movie Funny Girl. She means she has finally finally made it to the top. She would now be one of the Ziegfeld Follies, who put on gigantic staged numbers in the early 20th century.

Ned and I use that line with each other when we feel we have gotten to a pinnacle in our lives. When the New York Times Magazine published my Lives piece a few years ago. Lives! When I was on the Today Show. When I was invited to the White House for a dinner. Ned’s had his share of such honors as well. More than once we have both been Ziegfeld girls.

Last night was a Fanny Brice moment but not for me. As usual on a Thursday night, I sat in on one of Nat’s band rehearsals. Lately I’ve been going to Nat’s private voice session just before band practice, too.  I crept downstairs to listen in. “Crept” because I wondered if he would be different when I’m not there. I think he is more relaxed without me. What would he sound like if he were more relaxed — not aware of me there? I guess I have a theory that my presence during his voice sessions make him anxious, make him think about things related to his time with me. He might associate me with home, the weekend, and his schedule. Maybe with me there he thinks about his schedule, rather than be in the moment of the song. And when Nat thinks about his schedule, he becomes excited/anxious. His excitement spills over into anxiety so easily. He waves his arms and rushes through the songs and slurs the words more.

As I tiptoed down the stairs to where he was having his lesson, I heard him speaking in complete sentences. Within the song, of course. It’s not that he’s expressing himself with complete sentences, but when singing, he speaks. He does not have melody for some reason. He used to have melody as a little boy. You couldn’t stop his “Frere Jacques” while on the T. Good thing he was so cute.

Well, he’s still so cute. And so his singing with a speaking voice is gorgeous. He has what I call a rapping style of singing. I heard him singing the words to “Accidentally in Love,” by the Counting Crows and, well, the words! “I’m in love, I’m in love, I’m in love…” Those words! His voice! His speaking voice.

Yes, I’m being ableist here because I am showing a preference for neurotypical forms of communication. But anyone who knows me has seen that I rejoice in any form of communication coming from Nat, that I am thrilled to hear him or see him identify a want or need. Speech of any sort — typed, spoken, signed, gestured — is the way we step forward into community space and declare “I am.”

But. I am a flawed human and I am an honest one, and so I must declare for myself that I loved hearing Nat’s spoken sentences, especially in the context of a song.  Interesting, too, that he does not use melody, so the words seem even more real to me.

Then came the odd moment of Nat in band rehearsal afterwards, and his words are much less intelligible. It may be the loudness of the other instruments around him. I sense an almost panic in his delivery during band, where he is struggling to keep up, to perform. I suppose that is okay, because he is a musician in this partnership with the others, and he does have to keep up as best as he can. But I don’t want him to panic and feel anxious.

But I don’t want him to stop growing, either.

I wondered if there will be a time when the others around him, although they are developmentally delayed themselves, will resent his delivery. I confess that I look for it. I search the other guys’ faces for disdain of Nat’s more severe struggle with speech. With enunciating the words, with keeping at the right pace.

There is no such disdain, except me for my own weak shame. Shame is one of the worst emotions we can feel. Shame can immobilize you, it can silence you, it can make you hate yourself. It can make you cringe like a kicked dog. When actually I should just be howling at the moon in utter joy about how my challenged son is a front man in a rock band.

Hello, Gorgeous.


Friday, December 1, 2017

All that’s gold may not glitter

The name, or the concept, of “group home” is not pretty. I’ve heard people say, “we need a new term for group home.” The term falls from the lips like something dry and dusty. It’s a dead end. Ugly.

If a group home is run well, though, it is beautiful. Look below at a typical monthly calendar from Nat’s group home. What you should notice is that the activities are not necessarily blockbuster Disney-level exciting things. But this does not matter. AT ALL. What matters is that they follow this monthly calendar pretty much without fail. The manager gets it to us right at the beginning of the month so that the families can plan around it. The families let the manager know which weekend events their guy can go to. The golden nugget here is that there is communication among all involved.

The activities are not glamorous, but neither are my family’s. A lot of it is just operations of daily living. The things they do are just what a home might do, night by night, just living a life together. Sometimes it’s food shopping — whomever of the housemates wants to go. Sometimes it’s just a movie on tv. Sometimes it’s baking. Sometimes, though, it’s a trip to Dave&Buster’s or Sky Zone. Is your Netflix binge so much more uplifting?

In addition to the group activities, every individual in the home has one night a week that is one-to-one with the same staffer every time. This builds a relationship and a structure, around all the other structure written into the calendar. Nat goes with P once a week to his music class at the Teen Center, and P hangs out at the Teen Center, shoots hoops, listens to music. Nat is happy, P seems happy. I go and greet P and watch Nat practice. P brings me the meds Nat will need for the weekend — I must sign for them. It is all very official and yet very very natural and personal.

When I first heard about this weekly one-to-one, I thought grimly, “Big deal. That’s not much!” But now I see the beauty of it is that it is actually always done. Other poorly-run group homes may sometimes have the opportunity for more one-to-one, but is there a plan? Is it predictable? I think that we all know how important predictability is to our guys. And to us. Because if you know where your guy is most of the time, that is a lot of security right there.

Yes, in the group home the television is always on. Oh, how parents hate that. But I think the TV on is fine. Like it or not, the television is now the hearth, the way the radio used to be for people before TV. The way the fire was before that.  In our home it is not the television that is always on, it is our laptops. It really just depends on your social class or your own preference.

Group homes go out in an ugly van. For many, the group home van has symbolized all that you don’t want for your guy as an adult. It’s gray and it seems so dead-end. Right?

Well, think again. The van fits all of them like it does your soccer family, and it makes it easier for anyone who is having mobility issues to get in and out comfortably. It’s not a BMW X5 or a Volvo or even a CRV. Nope, it’s an old Toyota minivan.

So. What. It means they are out in the world, comfortably, dependably.

A big part of autism adulthood is getting past how things look. The guys may not be cute little boys. Maybe they don’t dress well, maybe they don’t have dental plans. If you are an upper or middle class family in America, you are used to “nice things.”

If you’re upper middle class you may be used to prettier cars, houses, vacations.  But now, in adulthood, in a group home, the guys are in a staffed home together and that in itself is very expensive. The staff live on a shoestring. They work other jobs. But here’s the beautiful thing: most of the staff has been the same for Nat’s entire first year there. I know who will be on when. I have an idea of his day-to-day life.

So no, the money just isn’t there for the shiny things. Group homes are not shiny. Not all that pretty.

And yet to me, dig deeper and you will see that even though something doesn’t glitter, it may still be gold. This monthly calendar — its very existence, and the fact that I know it will be followed — this is as shiny and beautiful as a trip to Bermuda.

December Recreation Calendar

Sunday Monday Tuesday Wednesday Thursday Friday Saturday









Decorate for Christmas & make ornaments for tree







Bowling League

Dunkin Donuts









NatB 1:1






Ice Bar in Fanueil Hall




Flaming Grill








Dunkin Donuts






Bake Night


NatB 1:1












NatB Concert

Party afterwards at NatB’s house








Bowling League

Dunkin Donuts




Holiday party at [nearby] group home @ 6pm




Families’ Gift Exchange








Dave and Busters


Hot Cocoa &Cookies/ Watch Christmas Movies






Bowling League

Dunkin Donuts






Make Pizza










NEW Years Eve


Chinese Food



ALL ACTIVITIES ARE EXPECTED TO BE COMPLETED! Please inform the manager immediately if this is not the case. Thank you- Management