Last night was the most amazing experience for our Donald!!! He sang in the Choir for Rocktopia, we are so proud of him for all that he has achieved. During the concert Karl struggled with being overstimulated by the loud music and lights. At one point during the concert, I looked at Karl & Kyle next to me and Donald on stage and realized that I was dealing with all stages of anxiety from Autism all at once and figured it would make a good blog.
On different online forums, we all see posts, questions and memes about Autism. When I see questions about a topic that I have helped the boys with, I comment. Lately I have been getting bashed by other Autism Parents and adults with Autism. Many stating that I have no idea what Autism and or SPD is, that I should be more understanding, go easier on the boys and allow them to live in their own world. Karl saw the comment about living in their own world and said "I live in the real world and my own world when needed." He is 10 years old and realizes that he needs to be able to cope with living in the real world and he is glad that I try to help other parents with my techniques. I am sorry but way too often I hear, "my child cannot do .... because he/she has Autism." It breaks my heart to hear that as I heard my boys wouldn't be able to do many things and they are doing them because I kept trying new techniques to help them cope. I know not every technique will help every child, the key is to never stop trying new techniques.
Back to Rocktopia - A few weeks ago, Donald got a message about being in a choir for an upcoming concert. All he needed to hear was that it consisted of Classical and Classical Rock, he was hooked. After the first rehearsal I asked, on a scale of 1 to 10, how excited are you? He said "Mom the scale is broken, this is going to be so lit." This was quite different from the Donald I knew 7 years ago!!!! Seven years ago when we lived in RI, Donald's Chorus group sang the National Anthem for a Providence Bruins game. After they sang we were in the stands watching the game, watching Donald try to be excited and deal with the noise made for a very interesting game. I have a video of him clapping, covering his ears with his hands, then clapping, then covering, etc.... We watch that video now and all we can do is laugh. Pushing Donald out of his comfort zone with my techniques over the years took Donald from covering his ears to singing on stage with an orchestra right in front of him, lights everywhere, loud rock music, cheering crowds, etc..... all the while he is handling it all without issue. He is on cloud one thousand today from the amazing experience :) I wish I knew a stronger word for proud!!!!
Now while I am tearing up with tears of pride watching Donald on stage, I am also holding Karl who is struggling. The day before the concert Karl was adamant that he was not going to the concert. He had every reason lined up, he yelled at me that there was no way he would attend and he begged me to let him stay home. While there was a large part of me that wanted to protect him and let him stay home, a larger part knew that I had to help him work through his fears and anxiety to experience something amazing. I talked with Karl about his worries and how I would be there to help him work through them, so he agreed to go. Last night we had to bring Donald dinner and clothes, the boys and I had an extremely long wait for the concert to begin, then there were technical issues which delayed entry. Luckily Karl carrying a backpack that weighed over ten pounds helped him regulate. After we were allowed to enter, we went to our seats, let the boys look around, then walked around the hallways for a bit to walk off some pent up energy. We planned our seats so we were on the aisle and the wall was behind us so he didn't have to worry about being in the middle of the crowd.
Then the concert began and Karl shut down emotionally. He had a blank stare, I got his attention and signed "are you OK?" he said "No." I pulled out the ten pound family lap pad and the thick earmuffs. He got better for a bit. Then he put his head in his lap and was crying, the lights were hurting him. At first he used the lap pad to block the lights, then he used the earmuffs. I knew he wanted to leave, I wanted to give in but felt this was too important, that we had to stay. I held him and he would squeeze my hand when it was too much. Slowly he started to take interest in the music. During intermission, I went against my norm and allowed him to play Candy Crush to relax. We talked about how he had been feeling and that it was worth trying to get through the second half of the concert and he agreed.
Well during the second half, he was a different child. He was watching more of the concert, singing and then playing an air guitar, rocking out to the music. My heart leaped with joy, had tears of happiness but most of all he was having fun. After the concert Karl and I talked about how he felt during the first half and he said he was glad we stayed. This morning I asked him if he would go to another Rocktopia concert and with excitement in his eyes and voice he yelled "YES."
While I was helping Karl cope, Mike was with Kyle. By the time Kyle was born, I had learned a lot about Autism and had started creating techniques to help Karl and Donald cope with Autism, OCD, ODD and SPD issues. This allowed me to apply those techniques very early with Kyle which means he has less issues at the age of eight then Karl and Donald did. Before the concert Kyle did have a temper from his anxiety but was excited about the concert so he pushed through. Kyle did not have any anxiety during the concert. He loved the concert!!! After he was oversensitive and had a meltdown from being tired but things quickly got better with Mom cuddle time :)
It is so easy to sit behind a computer and accuse someone of being mean, not understanding Autism, that they don't get Sensory Processing Disorder because you feel their techniques will not work. But when that parent says it has helped her three sons with Autism overcome many obstacles maybe, just maybe she knows what she is doing and maybe she can help you and your child. I would have loved for someone to post techniques that help. Sadly all to often posts and blogs are only about how hard it is to raise a child with Autism, reasons why meltdowns should be allowed, why their child cannot do a task, etc... when there are ways to help. If you feel something won't help your child, fine but there is no need to bash someone when it helps their child and many others.
I am hoping that after reading this blog you can understand that there are ways to help children with Autism cope in the real world. That keeping them home in fear of what might happen only enables them to not try new things. Our children need to try new things, experience events, go to the store, go swimming in the ocean, discover their own interests and most of all LIVE.
Every child with Autism should have the chance to go from covering their ears in a crowd to singing on stage at a Rocktopia concert.
Thank You to Camille & Ann for inviting Donald to be in the Choir!!!
A Heart filled Thank You to Rocktopia for bringing your amazing talents to Maine, allowing my boys to have the most unforgettable first concert experience.
If Rocktopia is coming to your area, I highly recommend you go, it is the most Amazing Concert11!
