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Autism & Disability

Choral Potpourri/Choral Ethics: Autism Awareness Month

April 7, 2022 by Marie Grass Amenta Leave a Comment

“Sunflowers for Ukraine,” Russell Amenta, artist with autism

(April is National Autism Awareness Month)

“Autism is part of who I am.” Temple Grandin

“Mrs. Amenta, we have to be kind to those poor parents. They have children with autism and have no hope.” For some reason, Dr. Marguerite’s* comment just ticked me off. This was over twenty years ago, and I was the president of a local chapter of the Autism Society of America. Dr. Marguerite was a speaker at one of our monthly meetings and I was trying to get things organized before everyone got there. She spoke patronizingly about our members as we got her materials set up. She never realized that I too was one of “those poor parents” and she was offending me.

My eldest son has autism and if you think I’m sensitive about it, you would be wrong. I accept it and him for who he is. I love him because he is my son and because, despite his disability, his sweet, loving personality comes through. I am realistic but I also am able to see his potential. It is so much better to focus on what he can do rather than what he can’t. Russell is a person, not a disability, and is worthy of respect.

Our family has tried to put a face on autism by being advocates in our autism journey. My husband, a physician, wrote the first children’s book about autism, which was updated with a new look and title in 2011. I have worked with parents groups, siblings groups and have been a music inclusion consultant. And have been a mentor for choirs of adults with developmental disabilities of all sorts. We are active in advocacy. No one should feel sorry for us; this is our life, and we live it as well as we can.

Of course, I fought for him when he was in school. I fought for him to be a music inclusion student when he began high school. At our first IEP meeting, I suggested he be in orchestra as an inclusion student. Our Staffing Team was dumbfounded that I had the nerve to suggest it! What they didn’t realize was the orchestra director was the spouse of my other sons’ piano teacher and I had already spoken with him. He agreed and was excited since he knew Russ came from a family of musicians. The Team finally agreed (I wouldn’t sign the IEP unless they at least tried it) to only the first ten minutes of class. I figured getting his foot in the door was better than nothing.

A week or so later, I got a message from the school, asking me to sign off on an amendment to his IEP. When I returned the call, I was flabbergasted to learn they wanted to extend the time he was in orchestra. The professionals thought since he was doing so well, it would be in his best interest to stay for the whole class. Who was I to argue with the professionals???!!!??? If they wanted to think it was their idea in the first place, far be it from me to rock the boat when I was getting what I wanted. He did extremely well and ended up conducting the orchestra for their Alma Mater at a concert toward the end of high school years. He made many, many friends and enriched his classmates’ lives as well; a win/win as far as I’m concerned.

Dr. Marguerite’s presentation itself was okay all those years ago. The one thing that I remember from her speech was she was talking down to us. She seemed to think she had all the answers and if we were more intelligent or educated or…something…we wouldn’t have a child with autism. What she didn’t acknowledge was EVERYONE will be affected by disability, through no fault of their own, at some point in their lives. You might have a cousin with Downs Syndrome or a grandparent with dementia. Your mother might have macular degeneration and go blind, or your neighbor might have a child with autism. Someone you love will be disabled.

When you are asked to have a music inclusion student in your choir, think how you would feel if it were your child. Don’t feel sympathy for them, feel compassion for them. Instead of focusing on how good it feels for you; focus on how good you are making them feel. It will make you feel good. But whatever opportunities you will be creating for them will far outlast your thrill. And that’s a good thing.

*Name Withheld

Filed Under: Autism & Disability, Choral Ethics, Choral Potpourri, Self Care, The Choral Life

Choral Potpourri/Choral Ethics: A Silent Wood

March 31, 2022 by Marie Grass Amenta Leave a Comment

“Ash Wednesday”, Russell Amenta, artist with autism

(March is National Disabilities Awareness Month)

“Use what talents you possess: the woods would be very silent if no
birds sang there except those that sang best.” — Henry Van Dyke

We all assume certain things about others.  Those assumptions are usually based on something we know about them–whether they’re up bringing or professions or conversations you may have had.  I try to be nondescript in many situations because people do make assumptions.  And having a child with a disability automatically puts you in a certain “box” of perceptions, mostly wrong.  In my professional life, most don’t know my situation and when it does come out, it is a shock.  My views about those with disabilities and the fine arts are not so revolutionary but are different from what many would expect.

I have seen folks with disabilities give performances in several performing art disciplines that are nuanced and passionate and have moved me beyond what I expected to feel.  These were far from perfect but watching people who are not supposed to understand subtext give surprisingly complicated performances inspires me to look deeper at this population.

If we want our children to become full members of our communities, all avenues have to be open to them, even the artistic ones. There are things that must be in place first, of course.  Meaningful employment, housing and transportation plus any health issues have to be addressed.  And, just like everyone else, people with disabilities have their own tastes.  My son Russell’s love for his CD of Luciano Pavarotti singing with Sting and Zucchero (an Italian pop star) may not be your son’s or daughter’s cup of tea but Russ loves it!  Sometimes, in our frustration with our children and disability, we forget they are people with likes and dislikes and talents and an inner life we may not understand.  We get caught up with other things, which may or may not be more important, but we forget.  Art and music touch our inner self; reach us on levels deeper and richer than everyday life.  Why can’t the arts reach our children at those same levels?

How many times, in your own life, have you turned up the radio on your way home from a stressful day, letting the music wash away the stress?  Or have you sung along with it? Loud.  Have you doodled or drawn when you were bored or upset?  Do you pick up your knitting or crochet to release stress or be creative?  Do you sing in your church or temple choir or attend performing arts events in your community, and do you feel connected to others through your singing or listening?  What about dancing?  Do you take a ballroom class with your partner (or do you WANT to) or line dance at your favorite country western place?  I am proposing our loved ones deserve the same outlets, the same way of handling stress or feeling connected, what ever their level of functioning.  Artistic expression is a basic, human thing and our kids are people.

My autistic son is artistic.  It sounds funny, I know, but he is.  At 12 months of age, he could match pitches, something that is difficult for most children under the age of 6 or 7 years to do.  He has a sense of style and color and something we call “Russell Feng Shui”, his version of how his surroundings should be.  He loves music, of all sorts, and has quite a collection of CDs.  He enjoys movies, mostly Disney, but has a sense of what he likes and plays those over and over again.  He has long been interested in coloring, painting and collage work and can be occupied by his artwork for hours some days.  We don’t consider art “busy work” or something he is doing just to “do” something because it gives him such joy.  It is truly an outlet for him to communicate who he is, to us and to the world.

Russ has perfect pitch, as does one of his brothers.  Years ago, at a youth symphony concert, Russell was sitting with us as the high school group tuned and tuned–and tuned.  He started to hum–his brother, Ben, looked me dead in the eye and said, “he’s humming the pitch they’re trying to tune to, Mom!”  He loves to listen to our piano tuner tune our grand–and will hum pitches that should be before they’re tuned.  One tuner told me he hates people with perfect pitch–I told him not to hate Russ, it’s the only thing he can do.  You see, Russell is not able to speak, and his humming of those pitches is the only way he has ever communicated with any sense of purpose.

My question to you is why shouldn’t he be artistic and musical?  His mother and brothers are musicians, as well as a grandmother, a great-grandmother and an uncle.  He has two aunts who are artists and designers, as well as cousin who was a landscape designer.  A grandfather was a nationally known dancer and ballet master. His father is a music lover and played music in our home from the time he was in the womb and beyond.  Just because he is disabled doesn’t cancel out his heritage of an artistic lineage.  He is a person, not a disability, and his artistic bent is separate from his autism.

Someone asked me a few years ago, as I was preparing to direct a new, elite chamber choir, if I could tolerate those not really musically gifted singing in my choirs.  It was an odd question, and this person did not know my background, especially since I think I am a better person, teacher and yes, conductor, because of Russell.  I have had to look past certain things and be creative in my solutions and hope I come across as tolerant and supportive rather than too quick to judge those with less abilities.  And, I have had to love unconditionally.  It was then I remembered the quote of Henry van Dyke.  Everyone should be able to participate in the arts, whatever their level, whatever their interests.  Our world is enriched because of their participation.  It would indeed be a very silent wood if they weren’t encouraged.

 

 

Filed Under: Autism & Disability, Choral Ethics, Choral Potpourri, Self Care, The Choral Life

Choral Potpourri/Choral Ethics: “…and the tongue of the dumb shall sing”

December 2, 2021 by Marie Grass Amenta Leave a Comment

For the month of December, I’m rerunning some Choral Ethics blogs from years past with a few modifications where needed. Two of my MOST REQUESTED December Blogs will be making their yearly appearances, including today’s. Happy December! ~MLGA

 I love “Messiah”. Truth be told, it is probably one of my favorite large choral works.  There’s a little something for everyone–from show piece arias to choruses that are both difficult and poignant to recitatives that move the story along while being musically interesting. The story that is told, using scriptures from both the Old and New Testaments, can be appreciated by all.

Traditionally, it is performed during the Advent and Christmas seasons, but it is really a Lenten work, first performed and commissioned for Lent.  We as choral musicians often chop it up to fit our needs.  And masterwork that it is, it adapts, no matter if we sing only the Christmas portions—plus “Hallelujah”—or the Lenten portions or anything in between.  Whatever we do is probably fine, since George F. Handel had different versions, depending on the soloist available.

I have sung, conducted, studied, and listened to “Messiah” since I was a little girl.  My Mom was a coloratura soprano and her preparations for “Rejoice” are part of my Christmas memories as much as decorating the house and baking cookies are.  I first sang “For Unto Us a Child is Born” when I was about 12 or 13, being allowed to sing with the adult choir because they needed more altos and I was singing alto at that point in my life.  I learned “He Shall Feed His Flocks” as my first aria of any sort, but not the recitative for some reason.

I was about 18 or 19 when I received my own “Messiah” score—G. Schirmer of course—as a Christmas gift from my mother. Mom told me to learn the arias and recitatives because they were money-making for any good soloist. And I did.  When I officially ‘became’ a soprano as an undergrad, I began to learn each aria and recitative from beginning to end, starting with “There Were Shepherds” and ending with “If God Be for Us” as well as everything in between. I conducted and prepared “Hallelujah” in an undergrad conducting class, using my own score, and have marks and comments in the margins from my dear Dr. Larson, which I treasure.

Conducting “Messiah” is always challenging, no matter who the singers are.  I have markings and notes and comments in my score from long ago performances as well as more recent gigs that remind me anything can happen and often does. I have had to sing as well as conduct a few times, because sopranos have gotten sick at the last moment and there wasn’t time to get anyone else.  I have had singers and instrumentalist faint. Conducting choral portions for a “Do-It-Yourself Messiah” has brought the craziest moments, with a youth symphony playing and soloists from the community. I have had to teach a conductor—who normally works with junior high string players—how to conduct recitatives because the “powers-that-be” wanted an instrumental conductor and not ‘just’ a choral person, with interesting results.

Still, the text moves me.  The choruses move me.  The music moves me.  I can be reserved and professional most of the time but some turn of phrase, some musical line will strike me, and tears come to my eyes briefly as I conduct. Some moment in the performance will reach me, jaded old musician that I am, and it is like I am hearing it for the first time.

One of the recitatives always gets me, no matter who is singing, who is playing or if I am performing or conducting.  It is sung by the alto, thank goodness, and it is the recitative I didn’t learn as a teenager.  The text, taken from the Prophecy of Isaiah, tells what will happen when the Messiah comes:

“Then shall the eyes of the blind be open’d,

And the ears of the deaf unstopped.

Then shall the lame man leap as an hart,

And the tongue of the dumb shall sing.”

It so moves me I think because it reminds me of my son, Russell, who has autism and who cannot speak.  I like to think that recitative is meant for him, and all people like him. I am comforted to know, even in this great work, someone thought enough to include this text. And I love it even more.

Until next week, be well and be safe!

I am not able to take my Choral Ethics Blogs to my chamber choir’s Facebook page today. Hope to see you again next week!

Filed Under: Autism & Disability, Choral Ethics, Choral Potpourri, The Choral Life

Choral Potpourri/Choral Ethics: Autism Awareness Month

April 8, 2021 by Marie Grass Amenta Leave a Comment

“Autism is part of who I am.” Temple Grandin


“Mrs. Amenta, we have to be kind to those poor parents. They have children with autism and have no hope.” For some reason, Dr. Marguerite’s* comment just ticked me off. This was about 20 years ago and I was the president of a local chapter of the Autism Society of America. Dr. Marguerite was a speaker at one of our monthly meetings and I was trying to get things organized before everyone got there. She spoke patronizingly about our members as we got her materials set up. She never realized that I too was one of “those poor parents” and she was actually offending me.

My eldest son has autism and if you think I’m sensitive about it, you would be wrong. I accept it and him for who he is. I love him because he is my son and because, despite his disability, his sweet, loving personality comes through. I am realistic but I also am able to see his potential. It is so much better to focus on what he can do rather than what he can’t. Russell is a person, not a disability, and is worthy of respect.

Our family has tried to put a face on autism by being advocates in our autism journey. My husband, a physician, wrote the first children’s book about autism, which was updated with a new look and title in 2011. I have worked with parents groups, siblings groups and have been a music inclusion consultant. And have been a mentor for choirs of adults with developmental disabilities of all sorts. We are active in advocacy. No one should feel sorry for us; this is our life and we live it as well as we can.

Of course, I fought for him when he was in school. I fought for him to be a music inclusion student when he began high school. At our first IEP meeting, I suggested he be in orchestra as an inclusion student. Our Staffing Team was dumbfounded that I had the nerve to suggest it! What they didn’t realize was the orchestra director was the spouse of my other sons’ piano teacher and I had already spoken with him. He agreed and was excited since he knew Russ came from a family of musicians. The Team finally agreed (I wouldn’t sign the IEP unless they at least tried it) to only the first ten minutes of class. I figured getting his foot in the door was better than nothing.

A week or so later, I got a message from the school, asking me to sign off on an amendment to his IEP. When I returned the call, I was flabbergasted to learn they wanted to extend the time he was in orchestra. The professionals thought since he was doing so well, it would be in his best interest to stay for the whole class. Who was I to argue with the professionals???!!!??? If they wanted to think it was their idea in the first place, far be it from me to rock the boat when I was getting what I wanted. He did extremely well and ended up conducting the orchestra for their Alma Mater at a concert toward the end of his high school years. He made many, many friends and enriched his classmates’ lives as well; a win/win as far as I’m concerned.

Dr. Marguerite’s presentation itself was okay all those years ago. The one thing that I remember from her speech was she was talking down to us. She seemed to think she had all the answers and if we were more intelligent or better educated or…something…we wouldn’t have a child with autism. What she didn’t acknowledge was EVERYONE will be affected by disability, through no fault of their own, at some point in their lives. You might have a cousin with Downs Syndrome or a grandparent with dementia. Your mother might have macular degeneration and go blind or your neighbor might have a child with autism. Someone you love will be disabled.

When you are asked to have a music inclusion student in your choir, think how you would feel if it were your child. Don’t feel sympathy for them, feel compassion for them. Instead of focusing on how good it feels for you; focus on how good you are making them feel. It will make you feel good. But whatever opportunities you will be creating for them will far outlast your thrill. And that’s a good thing.

NOTE to ChoralNet Readers: I have run this Blog sometime during April (Autism Awareness Month) every year I have been a regular Blogger for ChoralNet. If you have watched my virtual blogs, you have heard Russ vocalizing or seen a flash of him as he walks behind me. He is very much a part of our family and our lives, and he will continue to make “Russell Cameos” as long as I do the virtual blogs. I hope today’s Blog will inspire you to look at disability differently.

Until next week, be well and be safe!

*Name Withheld


I am taking my Choral Ethics Blogs to my chamber choir’s Facebook page for the foreseeable future. Please join me there this morning! https://www.facebook.com/themidwestmotetsociety/

Filed Under: Autism & Disability, Choral Ethics, Choral Potpourri, The Choral Life

Choral Potpourri/Choral Ethics: “………and the tongue of the dumb shall sing”

December 10, 2020 by Marie Grass Amenta Leave a Comment

As I mentioned last week, for the rest of the month of December Choral Potpourri/Choral Ethics will be running some of our “oldie but goodie” blogs from past Decembers. This is one of my favorites! MLGA

I love “Messiah”. Truth be told, it is probably one of my favorite large choral work.  There’s a little something for everyone–from show piece arias to choruses that are both difficult and poignant to recitatives that move the story along while being musically interesting. The story that is told, using scriptures from both the Old and New Testaments, can be appreciated by all.

Traditionally, it is performed during the Advent and Christmas seasons but it is really a Lenten work, first performed and commissioned for Lent.  We as choral musicians often chop it up to fit our needs.  And, masterwork that it is, it adapts, no matter if we sing only the Christmas portions—plus “Hallelujah”—or the Lenten portions or anything in between.  Whatever we do is probably fine, since George F. Handel had different versions, depending on the soloist available.

I have sung, conducted, studied and listened to “Messiah” since I was a little girl.  My Mom was a coloratura soprano and her preparations for “Rejoice” are part of my Christmas memories as much as decorating the house and baking cookies are.  I first sang “For Unto Us a Child is Born” when I was about 12 or 13, being allowed to sing with the adult choir because they needed more altos and I was singing alto at that point in my life.  I learned “He Shall Feed His Flocks” as my first aria of any sort, but not the recitative for some reason.

I was about 18 or 19 when I received my own “Messiah” score—G. Schirmer of course—as a Christmas gift from my mother. Mom told me to learn the arias and recitatives because they were money-making for any good soloist. And I did.  When I officially ‘became’ a soprano in college, I began to learn each aria and recitative from beginning to end, starting with “There Were Shepherds” and ending with “If God Be for Us” as well as everything in between. I conducted and prepared “Hallelujah” in an undergrad conducting class, using my own score, and have marks and comments in the margins from my dear Dr. Larson, which I treasure.

Conducting “Messiah” is always challenging, no matter who the singers are.  I have markings and notes and comments in my score from long ago performances as well as more recent gigs that remind me anything can happen and often does. I have had to sing as well as conduct a few times, because sopranos have gotten sick at the last moment and there wasn’t time to get anyone else.  I have had singers and instrumentalist faint. Conducting choral portions for a “Do-It-Yourself Messiah” has brought the craziest moments, with a youth symphony playing and soloists from the community. I have had to teach a conductor—who normally works with junior high string players—how to conduct recitatives because the “powers-that-be” wanted an instrumental conductor and not ‘just’ a choral person, with interesting results.

Still, the text moves me.  The choruses move me.  The music moves me.  I can be reserved and professional most of the time but some turn of phrase, some musical line will strike me and tears come to my eyes briefly as I conduct. Some moment in the performance will reach me, jaded old musician that I am, and it is like I am hearing it for the first time.

One of the recitatives always gets me, no matter who is singing, who is playing or if I am performing or conducting.  It is sung by the alto, thank goodness, and it is the recitative I didn’t learn as a teenager.  The text, taken from the Prophecy of Isaiah, tells what will happen when the Messiah comes:

                        “Then shall the eyes of the blind be open’d,

                        And the ears of the deaf unstopped.

                        Then shall the lame man leap as an hart,

                        And the tongue of the dumb shall sing.”

It so moves me, I think because it reminds me of my son, Russell, who has autism and who cannot speak.  I like to think that recitative is meant for him and all people like him. I am comforted to know, even in this great work, someone thought enough to include this text. And I love it even more.

Until next week, be well and be safe!

I am taking my Choral Ethics Blogs to my chamber choir’s Facebook page for the foreseeable future. Please join me there this morning! https://www.facebook.com/themidwestmotetsociety/

Filed Under: Autism & Disability, Choral Culture, Choral Ethics, Choral Potpourri, Self Care, The Choral Life

Choral Potpourri/Choral Ethics: Staying On Track

December 3, 2020 by Marie Grass Amenta Leave a Comment

“What is a weed? A plant whose virtues have never been discovered.” Ralph Waldo Emerson

Today is the first Thursday of December. In normal times, I’d be reminding you to slow down and relax. Perhaps I’d be clever and suggest you stop and take time to smell the Christmas Cookies. In years past, I’d advise not to let snowstorms or sick sopranos get you down when they force a change in your plans but this year, what can I say? Our plans are already so mucked up, there isn’t much to say.

Some of you are doing remote or virtual concerts and worship services. Some of you may be playing in-person to a few folks, spread out, but there’s no singing.  In addition, you feel like you’re doing it wrong, whatever “it” is, and no one can tell you differently since they also feel they are doing “it” wrong. Some of you may be doing NOTHING and feel sad and empty but also feel you shouldn’t feel that way because at least you have your health. It’s all been a swirl of emotions this year and each one of us are feeling things we have never felt before.

Many of us feel unsettled and uncomfortable because we are off our schedule for the first time in our professional lives. The last time I did NOT have a Christmas gig–of some sort–was when I was expecting my youngest in mid-December and was just too uncomfortable (and HUGE) to do anything. The following year, I had just been hired for a church position and was preparing to begin the New Year with a new job. Since then, I’ve done something Holiday Music related almost every year; and it’s been awhile.

One thing, one person really, who has helped me stay on schedule and helped me (and our family) have some structure during the Pandemic is Russell, my son with autism. Russ doesn’t care if we don’t have deadlines or rehearsals and can eat when we want, he just wants his dinner at the usual time. He doesn’t care if we’re binge-watching “Miss Marple” or “Vera,” he wants his shower and to go to bed when he’s used to. And his breakfast–with the one cup of coffee he’s allowed per day–better be ready when gets up or he’ll start looking for people to make it. Autism isn’t usually looked upon as a positive thing, but in these times that’s the way I feel. Those of you with young children on schedules probably feel the same way; being forced to have some part of your normal life is a blessing during the Pandemic.

I am getting out my Christmas decorations (and decorated for Thanksgiving and Halloween) in the next few days. Russ looks forward to the wreaths and the red bows and the Nutcrackers and that’s what he’s going to get, especially this year. It’s something I can do that’s “normal” for our family.

So that’s my advice to you during this strange year; try to do some of the normal things you do. Bake the cookies and fry the Latkes and decorate. As Ben suggested a few weeks ago, sing in the privacy of your own home. Do something that feels normal because there IS light at the end of the tunnel!

For the rest of December, I’ll be rerunning a few seasonal blogs from the last few years, updating them for our current situation when appropriate.

Until next week, be well and be safe!

I am taking my Choral Ethics Blogs to my chamber choir’s Facebook page for the foreseeable future. Please join me there this morning! https://www.facebook.com/themidwestmotetsociety/

Filed Under: Autism & Disability, Choral Culture, Choral Ethics, Choral Potpourri, Difficult Times, Leadership, pandemic, Self Care, The Choral Life

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