Last night, I took the kids to an Autism Awareness event in town. It is the first time that I have been able to take them for various reasons. It was the first year that I felt that Daniel would be able to go and enjoy himself and want to participate. I was not sure what to expect. I tried not having any expectations. I knew that I was walking into an event where it was called “awareness” and that word can have multiple meanings depending on each person’s perspective. I was not sure if the organization that was heading it was for acceptance or had other feelings toward Autism.
I had done my research about them and by all that I read they seemed to be very accepting.
Though, I still was not sure and being that I had so many negative experiences where we lived before I am very cautious. Little history, I had several churches claim they were accepting only to discover they thought Autism was demonic and/or Daniel needed healing or deliverance. NOT. I also, reached out to another organization that claimed they were there to help Autistic children with therapies, cost of therapies, and connect families for support, only to discover that they were pushing a cure Autism agenda. That is only a couple of experiences I had, I do have a few more, but I think that is enough info to explain my cautious attitude.
I kept my guard up and knew that if I felt or saw any of those types of things that the kids and I would just leave.
Thankfully, it was in a school only minutes from our house, easy to find and it always helps when we do not have to be in the car long. All the kids can get car sick, and Daniel still has moments of car anxiety that can be triggered going to new places. It was at a school in their gymnasium. We had to register when we got there and everything seemed very smooth and positive. The only thing that bothered me was that they had a DJ, blaring loud music that did not seem appropriate for young children, who have sensory issues. We could feel the vibrations out in the entryway. It was thumping and pounding, Daniel started to ask why his body was vibrating and why was it so loud.
I told him that we did not have to stay if it was too loud, but he said that he wanted to go in.
Everyone was very nice, but no one talked to us. They all just looked and smiled. I took it upon myself to take the kids around to play the games and make some crafts. They had a table sitting out with T-shirts to buy, but I was not sure what that was for until later. I was a little confused by everything because it was my understanding that it was an event for families with children who are Autistic and who have disabilities. They said on their website, to come help celebrate autism awareness month by coming to the event and that they provide this program as a service that is for families in our community raising a child on the Autism spectrum. (I paraphrased that.)
Here is where I had expectations.
What I read about the night indicated to me that it was for families raising a child(ren) on the Autism spectrum and to share information and resources offered by the community. No one spoke to us about the dog therapy when we went over, several times, to see the dogs and pet them. They talked to themselves and the dogs just sat there being pet. When I went to the table where the T-shirts were to see what it was about, no one talked to me except to ask what size shirt I wanted. I said that I did not have any cash; she asked if I had my checkbook. I did not. I had not expected to be giving money. I clearly did not understand the purpose of the event. She seemed to not know anything about what the organization offered and directed me toward a several handouts, but her main focus was for the fundraiser.
In my reading of the information on the website, which I read several times, I did not notice the fact that it was a money-raising event.
I could say that was my own confusion, I honestly do not know. Maybe I read things to literally, I do that you know. I was very pleased to discover that they have a positive outlook about Autism. There were several people wearing shirts that had the puzzle type of logo, but the images swirled into words that said, “Autism Embrace the Amazing!” Their organization uses their funds to provide help for families who cannot afford therapies, help with legal issues, getting SSI information and assistance, they help advocate for the rights of individuals with disabilities, and have parent support groups.
Their main purpose is to improve the life of young autistics through support and acceptance.
That made me very happy, and the atmosphere, though it felt odd to me was not negative. I am glad I went and I think the more events I go to the more I will get a feel of how to interact. Possibly, another event that is more directed specifically toward Autistic families will be a better fit. It was a wonderful experience for the kids. They had so much fun playing with all of the sensory toys and running around the huge gym. I do admit, I was a little worried when I realized we were in a school building. I never had to think of it before, but now my mind goes there. What if someone without understanding was to come in and attack solely based on the false perceptions of Autism from media and certain circles. I hate that I was thinking of that, but I did.
I had to scan the gym, look for the exits, think of an escape route, just in case.
I was not paranoid; I only felt that I could not be that naive to believe that everyone is accepting of Autism. That is what all of the negative media has done to me – it has made me cautious and feel that I need to protect my children from ignorance that could turn to violence. I did not think of it long, only to have a plan and move on. Because of that though, when Daniel was digging around in a toy bin for what felt like forever, (he could not decide what he wanted) and I lost sight of Ariel for a moment, I felt anxious. I scanned that gym like a hawk. When I located her, I told Daniel that I would be right back; I did not go far at all to yell for Ariel to come closer. However, when I turned around Daniel was gone.
Again, my eyes scanned the gym like a hawk.
Panic started to set in because I could not see him, finally, I spotted him. He was walking very fast straight for the exit. I could tell that he was in a panic from behind; he was walking faster and faster. I was yelling his name, his hands were flapping, and everyone just watched. I thought that was very strange after the fact. I told Ariel and Joshua to stay there and I ended up in a full on sprint because he was heading out the exit doors, and no one stopped him. :-/ I caught up to him, put my arms around him to give him a squeeze, and then, turned him around. His face was red, tears were in his eyes, and he was breathing heavy. He could not even tell who I was. I kept looking at him, squeezing his arms, saying, “Look Boo, it’s mommy. I am right here.”
After about the fourth time, he was able to recognize me.
Then, he said, “I thought you left me.” I reassured him that I never leave him and that I was right there. He apparently, did not hear me when I said that I would be right back. I said it three times, but I think it was all too much to process with the noise, toys, and excitement. I found it odd that no one stopped him or tried to stop him after they saw me yelling his name and running. I would have stopped any young child heading toward the exit doors without a parent, but that is me, I guess. He does look older since he is so tall …
I think writing this out indicates that I do have certain expectations.
I did not realize it, but I do. Overall, I am very happy with how everything went. The kids loved it, Daniel enjoyed himself, and the noise did not affect him the way that it used to. Even 6 months ago, we would not have been able to stay very long. We stayed for an hour and a half last night! We all left feeling good. The other thing I discovered was that the event was to help raise money for their Autism Awareness walk that is happening in a couple of weeks. I would like to participate, but I do not think I will be able to. I do feel that it was good for us to get out and try it. It definitely helps me with my social anxiety. I was confused at first, but then, I sat and thought about all I had observed.
It felt off, but I did enjoy seeing some of the kids that were there having a great time dancing. Joshua got his groove on to some songs and then, Daniel jumped into a little moves too. It was great! As I observed the volunteers and some of the other people who seemed to know each other, the words, “This is for them.” popped in my head. I realized that there were sensory toys and stations set up in the gym, but the bulk of the event seemed to be geared toward the people that already knew each other and for those who are not Autistic. I had a moment when I understood the lack of collaboration between autistic adults and autistic events.
It is one thing to read about it from others, it is another thing to experience it.
While, I fully understand the need to do things that will reach people not on the autism spectrum, I wondered if they would be willing to work with adults on the spectrum. It also, made me wonder what kind of event could be done for us in my community. I see us do a lot of campaigning and activity via the internet, but I have not seen too many activities that are done by Autsitics at a local level. Though, I have only thought of this and I have not done much research. There could be things, I just need to look. However, I do know that in my community there is not anything. I have been in communication with a woman in town who started an Aspergers adult group last year, but it dwindled due to several reasons.
She and I have still been trying to think of activities that would be good for the group.
However, life has been a bit hectic and full of activity so I have not been able to spend much time on that either. I think I am going to set some goals that will be attainable in the near future with this, but I also plan to set goals for next year’s Autism Awareness/Acceptance month. I plan on reaching out to this organization and meeting with another woman in town that heads up a local support group to get a feel. Of course, my first plan is to get connected and learn who these people are as people without any pressure on myself about these goals I am thinking about. I want to meet others who are working with the autism community in my town. I am hopeful because of the positive attitudes I have encountered so far, in every new social adventured, we have tried.
I am excited because they have been accommodating, accepting, and kind.
I am not sure where I am going with all of this, but I am processing. I do know that I would like to be more active in the community. I think it would be great if people were willing to listen to an adult autistics locally. Who knows, if I were to speak up maybe I could find others around here who would like to as well. I would like to find more mothers who are autistic themselves, I think it would be beneficial to find more women in my real life, but if that is not the case I would like to be open to other mothers who I could connect with. You never really know who you can find some sort of bond with, it may not be related to being a mother or autistic at all. I could find a friend at the YMCA in one of my classes.
Something has shifted in my thinking that I noticed last night.
I did not feel so lonely as I looked around and saw everyone talking, laughing, and hanging out. I did not feel hurt when people did not talk to me. I was satisfied with smiles and short conversations. I was not seeking them to understand my son or me. I was simply content and at peace observing, understanding certain dynamics, and enjoying all the children and my children. I was not offended at the lack of “autismness.” I understood what and why they did what they did. I think it sunk in for the first time that if I want something to be “Autism Friendly” that I am going to have to jump in and do something about it. I will be pondering this. Next! I can’t wait to write my next post sharing about all of the awesome things that has happened with the kids this week. It makes my heart overflow with joy when they are happy and proud of themselves!
I feel that last night turned out to be a spectacular evening on multiple levels.