Sunday, December 15, 2013

Finding Community Not as Easy as You Think

It struck me in the middle of the night, that my family has no community to which we belong. Oh we are Americans after all and are citizens of the US. But we really don't fit into our neighborhood. The boys never really had friends, were never invited to parties and were basically excluded from the every day life of the children in our town. Oh we could plan after school activities, join school clubs and have programs created for them in the school, but once that school bell rang at the end of the day, so did the boys' social activities end.

It definitely was more apparent for MrGS than CM2. Afterall the kids in CM2's year had taken it upon themselves to make certain that in general terms no one picked on him (yes he did have some issues in high school, but the VP assured me that it was typical teenage angst as opposed to deliberate picking on him like MrGS had been), while for MrGS the in-crowd made him the student to shun. As for me, I worked in the PTA, ran committees, even held executive committee positions, but nothing ever came of it. I tried to make friends, but it was as if our family had the plague.

I remember getting a call one day from the president of the PTA for help..."You are a worker," she said, "so please come help." But that was the extent of being invited into the community. Heck even the local Temple wouldn't deal with the boys. I had to search outside our community for someone to help them with their religious education (that ended up being an entirely different experience altogether).

Then came college. But not many things changed for the boys. They tried joining clubs. But it didn't work out. The anime club had only five members and only watched videos, which MrGS felt he could do on his own. The kids that ran the Jewish Student's Organization, only wanted to eat Shabbat dinner together (not that socialization wasn't our goal for the boys) but do nothing for political advocacy, so the boys couldn't care less. (The "rabbi" actually told MrGS he could come up with an idea for a program and let him know if he needed any help.) Then there was the gamer-club that CM2 tried to join. This was actually a good experience for him until the members dressed up as their favorite game character. Costumes and role playing is not something CM2 does in real life. It freaks him out since he was a little boy. (Halloween is not a big holiday in our house.)

CM2 has been trying of late to talk to kids in the lounge area. He wants to badly have friends and talk to other students. He is trying. He likes to eat in the cafeteria and the para pushes him to sit at communal tables, looking for some students he knows that share similar interests with CM2.  The para is trying to help him with community.

MrGS goes into the study area of his graduate school. But he does work. His interaction is merely during class and to work on a project. He, while having more in common with the students in his program than ever before, still doesn't have community. Interestingly his adviser and Department Chair actually mentioned for him to come hang out more and meet other students in the lounge. The school is known for community and creating a welcoming atmosphere. Honestly, MrGS has always felt welcome. Its the community thing he doesn't have, but maybe next semester as he will be spending more time during the week at school too. Luckily, the para is trying to facilitate community for MrGS too.

But community in many ways is more. Its a feeling of belonging to something beyond yourself. I don't think the boys feel it. While we are Jewish, we don't belong to a Temple anymore (see link above as to why) and feel very disconnected from the Jewish world. We care about politics, but not so much that we would work for one party or the other. Absolutes don't work in this house when it comes to issues and we have no patience for those who are kool-aide drinkers on either side of the aisle. And no, they don't feel that they are part of an "autism" community. It would never ever dawn on them that they should be. (That one single focus, which spends too much time looking for grievance than it does in support. I'm tired of it. The real world may need some revamping, but everyone and everything is not out to get you because you are autistic. Most people really couldn't care less as long as you do what you are supposed to in life. It's not ableist to require social convention and appropriate behavior.) They are not defined by their autism and they do not want to be defined by their autism as much as it is a part of them and they are proud of who they are. They will not hesitate to let you know that they have aspergers. It's a fact of their life, just like their Jewish heritage, their American heritage, their affinity for all things techie.

We are hoping that the boys will have some varied volunteer experiences this vacation. They have 6 weeks off. "Broadening their horizon is important," as hubby said. Getting them out of their comfort zone and seeing how others live and need help. Maybe that will also put them into a new community that will accept them for who they are.

CM2 has joined social media so for him at times community in on line. It's not really a bad thing. It helps him feel no so alone in this world. He has found fun and information and people with similar interests. It has been good for him. But he also was cyberbullied as well. We needed to teach him how to handle that. It does appear that these issues have resolved themselves for the moment and all is well on that front. (Ask me tomorrow and we will see if I have the same answer of course.)

Community was why I joined social media in the first place too. It helped with the isolation that comes with raising special needs kids and being shunned in our own real life. I have met many interesting and great parents on line. There has been support, but there has also been in-fighting, childishness and the petty disregard for another's opinion. For the most part while I am not gone from social media, I have found looking for information, reading and writing a better use of my time then looking on line for community.

I would like the boys to have community because this way they have another level of support other than hubby and myself. It would be a way for them to meet someone who could be a "girlfriend" and someone who really cares about them. The Autism Science Foundation did a study that showed the most successful people with aspergers were those with either "spousal" or family support. The reality is that hubby and I won't be around forever. The boys need a support system beyond us.

This was actually brought home to me the other night. We were discussing our ages, hubby and myself. Both of us are in our mid 50s. I had to explain to my very stricken looking oldest son (I guess he had us buried in a few years), that we have decades to go in life and not to worry.

"Oh good," he said, "I'm not near being independent yet." (What terrific self-actualization on his part by the way.)

I know that parents worry about their children being alone in life. Neurotypical parents worry that their child will not have a life partner too. But its different when you have a special needs child. I am still haunted by the article "Who will Love my Child after I am Gone?" I suppose that is why when playing the hashtag on twitter #youmightbeanautismparentif I wrote: You have a will and a guardian picked out, but know deep down inside you can never ever die.

The boys having community would help me sleep better at night. Having the boys be more independent would help me sleep better at night too. And no it's not about me, it's about them, their support, their community, their feeling of belonging to something greater than themselves and being accepted for who they are by people not connected to them by birth, genetics or blood. In other words, being accepted by the world around us, like any of us wish to be accepted, simply for being who we are.

Meanwhile, sleeping pills would help me sleep better at night too, but I chose wine instead. (Yes I know that's not a good choice, as alcohol will dehydrate you and wake you up in the middle of the night.)



Elise