I woke up this morning with a heavy heart. It was the 10th of the month, my posting day here at Hopeful Parents, and I had nothing written; zilch, bupkis, nada, boo, jack, zippo.
What I did have was a really nasty cold/virus/throat & possibly bronchial infection (with laryngitis) that started up pretty much the day I finally felt about 90% recovered from last month's gall bladder surgery.
I love writing my Hopeful Parents posts, even thought they usually wring blood, sweat and tears out of me. I try to dredge deep into my special needs parenting soul, write from the place where the feelings are raw and a little scary, because I feel I owe that to the people who come to read here, my community of other special needs parents. This is our place, where we can be vulnerable, safely, with each other.
But I just don't have that in me today. All my energy is going into continuing to function at the bare minimum necessary to keep my family and household afloat. So today I will be bringing you a lighter piece here, talking about something other than just myself and my family, my thoughts and feelings.
May I present the wonderful organization: Music for Autism.
This past Sunday, Jacob and I went to our first Music for Autism interactive concert. I had known about this organization for a couple of years, since fairly early on in their existence here in the U.S., as a matter of fact. I had gone to a day long conference at Mt. Sinai Hospital here in New York City, all about new autism research. They had a little related organizations area set up for the lunch break, and there I found Robert Accordino, the enthusiastic founder of Music for Autism.
It was a wonderful idea: good music by professional musicians, classical and modern, presented in a setting that is friendly to families with autistic children (or adults). Sensitive to sensory issues, permissive of movement and noise, singing along tolerated, dancing and participation encouraged.
I signed up for the mailing list, I RSVP-ed an enthusiastic "YES!" to every local concert. But somehow we never made it to one. For too long a time I was trying to make weekends full time "family time" and had not yet accepted how much we needed to separate the children on the weekends to ensure peace and harmony, allowing them their pursuit of their differing agendas.
Ethan does NOT enjoy music much, while Jacob loves it. I kept trying to talk Ethan into coming to a concert with us. Silly me. Last Sunday, accepting the state of things, I made arrangements to drop Ethan off early with his best friend for an extended play-date.
Then Jacob and I went to pick up my recently widowed 88 year old mother who cannot get out and about on her own, and who loves music and to be around children.
On Sunday, this particular concert turned out to be of a collection of show tunes from, and sung by, cast members of the Broadway show "Jersey Boys." Fun, raucus and sweet songs from the 1950s. Wonderful talent, giving their time for free.
The concert was divided into three parts, the first and longest is a "straightforward" show (with movement and dancing encouraged). Then there was the two part interactive section, consisting of first a conducting lesson, where everyone participated by sweeping their arm to the beat; and then they brought out the instruments.
This last was clearly Jake's favorite part. Drums, tambourines, maracas, a wide array of rhythm instruments of all types appeared and were handed out to anybody and everybody. All were encouraged to play along with the songs. A delightful, joyous cacophony ensued and Jake (and my Mom) were happy as clams, making music with all around.
Afterward we went to lunch at a local diner with a friend and her four year-old son who had also come, were regular attendees at these concerts. A perfect Sunday.
It was just lovely. And now, instead of falling into my usual habit of mentally berating myself for not doing this sooner? I am going to take the positive and high road here, and say that going forward we are now committed to showing up with bells on, whenever the next local concert should happen.
It was a wonderful experience for Jacob and I (and my mother) to share. And also? More than that. Community building was going on.
There was such a sense of ease and comfort among all the many families that were there, a feeling of belonging. We were a mixed lot: there were young children, older children and teenagers; even a few adults still in their parents care, who rarely have family events they are so welcomed at. There were children who were deeply on the spectrum, non-verbal; there were kids whose spectrum issues were lighter, and less visible; amazing dancers; kids who seemed to have trouble controlling their bodies; verbal kids singing along; squawky kids who screeched; parents, grandparents, aunts, uncles and typical siblings, too.
We were families of all stripes, shapes and sizes and this space clearly belonged to us. We could be ourselves here, and all felt welcome, accepted, accommodated. They did a great job making sure things were set up the way we needed them to be. Instead of applause which can startle and overwhelm some kids with sensory issues, we held our hands up, wiggled our fingers in the air, as if we were making sparkles with our fingertips.
There were tons of cheerful, friendly, helpful volunteers there, circulating among us, making sure that everyone was participating as much as they wanted to or were able. They danced with kids, helped lead overwhelmed ones and their parents to quiet spots, distributed and collected the instruments for the participatory hullabaloo at the end.
And the best part? It is funded through grants, through fund-raising, through generosity, and is free for families to attend. Yes, FREE.
Please go to their website and check it out, and if there is a concert in your area, I encourage you to show up. If not? Get in touch with them, see if you can make one happen. And if you're rolling in dough? Contribute to this organization, they make a difference.
Jacob and I really needed this, last Sunday, something easy, fun, just for us. Thank you, Music for Autism, for providing us with a space to be at ease, whirling and twirling together to our own different drum.
Varda writes about "birth, death and all the messy stuff in the middle" on her blog "The Squashed Bologna: a slice of life in the sandwich generation" She also tweets as @Squashedmom. Varda is proud to be a Hopeful Parent.
Does this group ever travel to other cities? Like Baltimore!? I know my older son, Sam, would love it!ReplyDelete
Sunday, click on their "concert calendar" on their website - there's a concert in May in Rockville, MD (I know that's closer to DC - but possibly doable for you?)ReplyDelete
This sounds so awesome! I'm glad you had such a great time! This is definitely something I'll check out—especially since they have concerts near me!ReplyDelete
I am a musician/songwriter with Asperger's Syndrome. I was really excited when I heard about Music for Autism since I've always loved music and it's been a great comfort. I've been performing for over 20 years and when I was still in school I wrote a song about living with my disability called "The Hard Way." It's from my first cd. Music for Autism has many wonderful performers that participate, but maybe they don't have a performer like me who has a form of autism. Here's the link to the song on You Tube. I hope you like it. It's dedicated to my mom.ReplyDelete
I think my song is an anthem for our cause. I have performed it in many settings - disabled and non disabled audiences and I'd like to perform it for you Hopeful Parents.
I'd love to hear from you and feel free to pass this message along.