Angels on Stage

It is difficult to find time to blog on the weekends, so I think I will combine all my weekend gratitude into Monday's posts from now on.  Today I want to share with every possible person I can reach, how an organization called Angels on Stage has changed my family.

Angels on Stage is a theatre troupe serving kids with special needs.  The kids who perform with AoS run the gamut in terms of challenges.  There are kids with neuromuscular disease, kids with Down Syndrome, kids on all areas of the Autism spectrum . . . you name it.  I've met parents whose child was afraid to leave the house, but is now learning public speaking and becoming independent.  Many of these kids would never have been given a role in a typical theater production.  AoS not only gives them the opportunity, it provides the support they need to succeed, and more. They provide buddy coaches, each of whom is a gift to our kids, and the staff is such a unique group of people who have backgrounds in both theater and special education.  They create an atmosphere in which all the kids, no matter the challenges, can thrive.

There is a song that they sing at the end of every practice, and also at the end of each show.  It starts with just one Angel standing alone singing the words "If just one person believes in you.  Deep enough and strong enough believes in you. Hard enough and long enough, it stands to reason that someone else will think 'If he can do it, maybe I can do it"  making it two . . ."  and then a second angel comes out and they sing the second refrain together . . . and then a third comes out to sing, then  fourth.  Then they all come out to finish the song "And when all those people believe in you . . . It stands to reason that you yourself will start to see what everybody sees in you. And maybe even you, can believe in you too."  (And now I pause because I can't even type the words without crying.  Good golly am I hot mess of sentimentality.)  This is now our fourth season with AoS and I still cry every single time I hear them sing that.  What makes that song so powerful is the fact that it is an absolute truth, and it is personified in this organization.

The people who put AoS together and who work so hard to support and teach and inspire our kids, do absolutely believe. While much of the world looks at kids with special needs through the lens of disability, these people look at our kids through a lens of possibility. They believe with their whole hearts that these kids can do amazing things, and their faith translates into their faith, and they make magic.  The truly do.

My own experience with AoS began when Gabriel joined in their second season.  It was such a joy to see him up there, dancing and singing as a jungle boy in Jungle Book!  I cried through all the performances, not just for my Peanut, but for all those kids.  They truly blew me away!  They embraced the opportunity with such fervor and such joy.  It is a miraculous thing to watch kids who, in every day interactions, may seem inhibited, insecure, (and to some, even incapable) get up on a stage in front of a packed theatre and  declare "Here I am!  Look what I can do!"  The following season they put on an amazing production of Aladdin that, again, just left the audience in awe.  That year was also the year my oldest son was dealing with bullying and his self esteem took a horrible beating.  It was at our last practice of the season, when all the Angels get to take a turn and go on stage and shine, doing whatever they wanted to share, that the light bulb went off and I realized that I should have had Nick in this all along. I realized I had been doing Nick a great disservice.  My view and understanding of his challenges with Asperger's was colored by his brother's Down Syndrome.  I failed to see how difficult Asperger's truly can be because it wasn't the same glaringly obvious challenges that come with Down Syndrome.  When I finally "got it" and realized how much he could benefit from the safety and acceptance that AoS provided,  I asked him if he would like to join, and he was very hesitant.  He was afraid and he didn't think he could get on a stage, so I told him "That's the best part of Angels.  It is not about the production, it's about YOU.  So if you join and come have fun at the practices and at the end of the season, when it is time to perform onstage, if you still don't want to, you don't have to." So he reluctantly agreed.

That next season the play was Alice in Wonderland, all three of my boys were Angels, and Nick asked for a role that had no lines.  (He was a Card).  We made it through the season and at Tech week (the week leading up to show weekend when we have dress rehearsals every night), as they closed out each rehearsal that week, they asked Nick if he would like to be one of the first 3 kids to step out and sing "Just One Person" and he declined every night.  But he told the production manager he would try on show night.  Friday night they had the first performance, and they all come out and performed their roles and left us all in tears.  Then an Angel came out to start singing Just One Person.  Then the second Angel came out.  And then Nick.  Holding a microphone and singing on stage in front of a packed theatre.  I don't think there are words to describe what a huge victory that was for him.  I'm quite sure no parent was crying as hard as I was.  Now AoS is beginning its fifth season (and our fourth with them), and this year Nick auditioned for and got the speaking role he wanted, and he is showing more confidence and reclaiming his self esteem.  Gabriel and Elijah are both also making enormous gains in their confidence and their abilities.  

That is what AoS does.  They take kids who so many see as "disabled" and from whom many  don't expect much, and they believe in them with their whole hearts and they inspire these kids to believe in what they can do, and together, they give these kids wings to fly higher than anyone ever thought possible.  I get to spend every Saturday morning surrounded by and working with all of these extraordinary people.  I am so deeply grateful to all of them for what they have done for my boys, and I am so glad that I can now be a part of the AoS family by volunteering and helping out during practice.  These people have become my family.  They have helped to nurture my children, and they have nurtured me.  They have made sure I never again feel alone on this journey of "special needs parenting" and for that I can never ever thank them sufficiently.

I am going to end this post with a request, which is not something I would normally do, but this is more than important to me.  Please share this.  Share it with everyone you know.  If someone happens to read this who has the resources to help this organization grow by supporting us financially, or becoming a board member, or in any other way, please consider doing so.  The staff and volunteers put their whole hearts into this, they are motivated by pure love for kids who have a rockier path, and they deserve all the support in the world.  You can find out more at angelsonstage.org and if you will be in the San Jose area next March, please come see our kids perform.  You won't be disappointed.  Thank you.

And Thank YOU, Nina, Matt, De, Pam, Judy, Unc,V, Melanie, Sher, and everyone else at AoS.  You all are the angels, and I thank God for you every day. You give my children a safe place to be their unique selves and you celebrate them for who they are.  That is a gift beyond measure, and all I can say is thank you and I love you.

I Hate Making These Kinds of Decisions

Next Wednesday, both Elijah and Nick have their "graduation" ceremonies.  Nick is graduating from 5th grade, EJ from Kindergarten. At the exact same time.  I realize that some people consider a kindergarten graduation to be a bit over the top, but EJ really struggled this year and made some huge gains.  I also know his teacher very well, and I know the amount of effort she has put into making it a very special day for both kids and parents.  Fifth grade is more of a milestone, and the ceremony will be more formal, less sentimental, I assume.  Like Elijah, Nicholas also overcame much this year.  It was his first and only year at this school, so there aren't the years-long friendship bonds other kids have.  He has grown so much and pushed himself in ways he never has before.  This was a huge year for him, and I want to celebrate him.


Unfortunately,  I can't be at both, so Robert and I will tag team, and video. I am struggling with who gets to go to which event, so I thought I would include the boys in the discussion.  If I got lucky, one would have a preference for Mom and the other a preference for Dad, and I would therefore be absolved of the mom-guilt. Silly mom.  When is it ever that easy? We explained the situation and asked for their thoughts.  Elijah immediately squealed "I want Mommy!" and Nick responded to that with "Heeeeyyyyyyyy!  I want Mom!"   Here is where I have to give Elijah credit.  That kids KNOWS his emotional manipulation and he wields it mercilessly. Without so much as a pause, he immediately began to sing to me a song I can only assume is on the program for next week's ceremony. "I think you're wonderful! As wonderful can be.  I think you're wonderful!"   Wait.  It gets better. He paused, looked at me with that "how-can-you-possibly-say-no-to-me" smile and said "Why aren't you crying?  You're supposed to cry." Nick's response?  "Ok, FINE!  You can have mom."  He didn't say it graciously.  Robert was right there for the whole conversation, by the way.  Poor Daddy.  I tried working the whole "you don't want to hurt Daddy's feelings, do you?" angle.  Apparently, they have no problem with that.  Must be a guy thing.  Maybe if Robert let them see him cry . . .


So I guess it's settled.  Kind of.  I still feel the mom-guilt. So now the question is "can I trust Robert to video it?  And who can I ask to take pictures for me since the only good camera will be with me?  Now taking volunteers.

Autism Awareness Day; Celebrate your child! Or not.

Maybe I am living in a bubble.  Maybe I just choose myopia.  Maybe I have enough conflict in other areas, that I choose to ignore conflict I don't want to see.  I am really very sad and disappointed that, in reading through the myriad posts and links and articles today, I am finding so much conflict and anger and dissention in the Autism community.  I hadn't realized there was such a groundswell of opposition to Autism Speaks or that the idea of "celebrating" our kids could be so offensive to some in the Autism community.  I know that the roads we walk are not always the same.  I know Autism is different from Down Syndrome in that regard, that there is so much greater variance among those born with it.  I do know my son was born with it.  Maybe I would feel differently if he were on the other end of the spectrum, and not high functioning.  Maybe I would be angry, and believe with my whole heart that something was done to him.  But that is not my path.  My path is what my path is, and I celebrate my son because I love him exactly how he is.  I hurt when he hurts and wish he didn't have to struggle, but doesn't every parent experience that to some degree?  Does anyone's child, neurotypical or not, have an easy, challenge-free life?


My path includes Autism and Down Syndrome and medical fragility.  Vaccines did not cause my son's condition, but what if it had? If I had been told you can vaccinate your son, but he will forever walk this path as a result?  What if, knowing that I could save him, I risk the life of my other child?  My middle son is a veteran of four different hospitals, his early years defined by medical challenges and immune deficiencies. So maybe I could have saved one son from challenges and heartbreak, but I would have put another son in grave danger at the same time.  So, I admittedly have a very hard time empathizing with the more vociferous anti-vaccine voices out there. As alone as the special needs path can sometimes feel, the truth is that we are all interconnected, and a decision like the one to vaccine or not is not made in a vacuum, and it has real word consequences beyond our own bubbles.


Of course, I have a husband who grew up with all the same challenges as my oldest son, but no diagnosis, so when I hear that the rate of Autism is now 1 in 88, my mind doesn't automatically look for a villain in the form of needles.  I think that makes sense, because our generation had so many kids go without a diagnosis.  They have been there all along.  We just didn't see them.  Which is why I choose to celebrate, instead of being angry.  Because so may people now can look at my boys, all three of my amazing, wonderfully non-typical, special needs boys, and SEE them for who they are.  If I could take away one son's Autism, or the other's extra chromosomes, I might make their life easier, but I would lose the very special things I love about them, and they would not be richer for it.  So I will celebrate their differences, and I will celebrate their struggles, and I will celebrate the very amazing victories bourne of those struggles.  Our path may not be well paved and easy to follow, but it is adorned with amazing grace and beauty, and I wouldn't want to be anywhere else.

Heartbreaking

In an elementary school in Florida last week, the unthinkable happened. A five year old boy was humiliated and demeaned in front of his class . . . by his teacher. The little boy's name is Alex, and Alex is currently being evaluated for Asperger's, an Autism Spectrum Disorder. His teacher decided the best way to deal with Alex's behavior challenges was to make him stand in front of his classmates, then call on each one in turn to tell Alex what they disliked about him, and in the end called a class vote to remove him from class. Fourteen of his classmates voted him out. Two children voted to let him stay. He was then sent to the nurse's office until his mother came to get him.

This story at once deeply saddens me and infuriates me. I am both a teacher and a mother, and I cannot comprehend what thought process led to this woman thinking that this was in any way an acceptable way to deal with children, much less a child who has special needs. How did she not see the damage she was inflicting, not only on Alex, but on the entire class? What lesson did she teach these children about how we treat each other as human beings? What lesson did she teach them about understanding those who are different than we are? Instead of teaching them about patience and compassion, she taught them that it is okay to ridicule and demean. Instead of teaching them acceptance, she taught them to exclude and ostracize. What a terrible legacy to leave her students.

And what about Alex. I cried when I read this because it does hit so close to home. People who know little about Asperger's will often look at a child and see someone who is bothersome or annoying. I know my son wants more than anything just to have friends. He longs to fit in and be accepted, but it is a growing challenge for him to connect to other kids in meaningful ways, though he tries very hard to do just that. Children with Asperger's lack the kind of social cues that come naturally to the rest of us, such as the ability to read facial expression or body language. They don't perceive subtleties in tone. They don't get sarcasm. Children with Aspergers thrive on structure and routine and often have difficulties coping with changes to routine. Alex and his family had only moved to the area this January, a huge change that can be very difficult for children like Alex.

Children with Aspergers often have an intense interest in a very narrow range of subjects, and have uncommon knowledge about their preferred subjects. This can cause difficulties on the playground or in group settings when the child literally cannot switch tracks to engage in another type of play, and cannot understand why others don't want to play the same way s/he does. The child will often talk a lot about the favorite subject, with one-sided conversations being common. They don't know how to give and take in conversation. For Nick, when he gets started talking about pirates he simply cannot turn it off until every last thought is out of his head and verbalized. This can take a long time! In a social situation, this can create barriers to forming friendships.

Children with Asperger's very often also have symptoms of sensory integration disfunction. They have heightened sensitivity and can easily become overstimulated by loud noises, bright lights, or textures. When Nick is overwhelmed by his environment, it affects his ability to focus and follow along. I imagine much of little Alex's behavior problems can be attributed to this.

Reading stories like Alex's makes me anxious for Nick. Thus far, we have been blessed with truly remarkable teachers who see Nick for who he is and know how to support him and guide him. But I fear that will not always be the case. It is going to be challenging enough for him to navigate the often treacherous waters of social interaction with his peers, without having to worry that a teacher might someday also be one of his tormentors.

Little Alex should never have been treated that way, no matter what behavior challenges he presented. Nor should his peers have been taught that it is okay to treat others in this fashion. I can only hope that this teacher is no longer allowed to teach, and that Alex finds the kind of teacher he deserves; one who will nurture and support him, not belittle and demean him because he is different. Isn't that what all children deserve?

If you are interested in signing a petition to have this teacher removed, you can go here, where you will also find a link to the story.