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Human emotions are interesting things. I’ve noticed the social gap between Joseph and his 7th grade classmates since school started, but still! — still! — part of me hoped I was just perceiving it inaccurately. However, I met with Joseph’s Resource Teacher last week, and she expressed the same observation: The divide between Joseph and his peers has taken a huge leap.

Joseph’s noticed. He wonders aloud why his former inclusive classmates no longer invite him to play ball with them or to go see the latest Star Wars movie with the gang. Ugh. Stab me in the heart and twist the knife around, why don’t you.

Here’s what the research says about it:
Due to increased complexity of social communication that accompanies aging- social deficits become more prominent in adolescence (Tantam, 2003; Klin & Volkmar, 2003).
Adolescents with ASD report higher levels of loneliness and lower peer relationship quality than same aged peers (Capps et al., 1996; Bauminger & Kasari,2000)
Bullying dramatically increases in adolescence (Tse et al., 2007)

And here’s what the research offers as a solution:
Adolescents involved in experiential training groups demonstrate:
* Reduction in school-related “problem behaviors” (Graham & Elliot, 1990)
* Enhanced knowledge of social skills
* Increased frequency of get-togethers with friends
* Improved global social skill- as rated by blind researchers (Barry et al., 2003)
*Increased perception of peer social support (Tse et al., 2007)

Ok, social skills groups. We could do that. I got on the phone, called school psychologists in our small town. Plates already too full, though they definitely see the need. They checked in with their Speech and Language therapists. Plates already too full, though they definitely see the need. I went to Joseph’s school, pleaded our case. Thus the meeting last week with the Resource Teacher who said, in essence: Plates already too full, though they definitely see the need.

Then there’s me. My college degree is in Business Economics. But I have a bit of spare time and I’ve spent a lot of years studying autism – and, of course, learning about it firsthand. Said Resource Teacher agrees that it should be me, says they’ll give me a room and any help they can give.

Spoke with Blue Eyes about it yesterday. I said that a room at the school is great for a start, but I want to get these kids into actual social situations, like going out to a restaurant or to do pottery or to see a movie together. I want to get local merchants involved, helping to foster some situations. And while we’re at it, what about their futures? These kids will probably need colleges or work training programs that offer special support – programs that can be costly. How about later on, when they want to live independently? Perhaps there is the need for small group homes, where an adult or two lives with them or checks in daily. For years now, we’ve felt the need to form a non-profit to help out the local autistic community — but now it’s obvious that it needs to happen. And, since everyone’s plates are so dang full, it’s also obvious that I get to do it.

Holding out the need for help. While I have taught a lot and therefore have some confidence about leading a social skills group, I have no idea how to form a non-profit. And I have low tolerance for paperwork and bureaucracy. Staying open to the angel/s who are going to show up and help me with this.

My normal pattern would be to resist all of this. I have, in fact, spent years resisting forming a non-profit,  even while seeing the need. But now I am unlearning those ego patterns and realizing that it’s easier to point the train in the direction it’s already going. This train is gaining speed and power, and you know what? I’m going to let God, life, whoever express through me what S/He/it wants to express.

All aboard! Here we go…

 

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When it was really bad 7 or 8 years ago — when Joseph didn’t sleep and I didn’t sleep and we were socially isolated and our marriage was hurting and anxiety constantly gripped my heart — Blue Eyes dragged me to a doctor for my first prescription of sleeping pills. This doctor was a spiritual friend and, on follow-up visits to get more meds, he would recommend that I take time out. Specifically, a seclusion – a time of silence for meditation, reflection and rest. But Blue Eyes was working a lot, we had no family who would take it on, and I felt too panicked to entrust Joseph to anyone else’s care. Those were by far the toughest years of my life.

chakrasA few years ago, I started taking seclusion again. Not for a whole week like I used to, but for 2 or 3 days at a time. Seclusion is where I am now, in fact – sitting on the deck of a private cabin in a spiritual community, with a view of tall trees and hills and the melody of a river some distance away.

I don’t “do” much when I’m in seclusion; I become a human being instead of a human doing. I meditate more and my mind gets quiet. I feel my connection with all. I remember that I am a spiritual being dancing around in a human body for just a short time.

And of course I reflect about Joseph. Who we have now is so different from the Joseph of 7 or 8 years ago. All the work we did? It was so worth it. Teachers and school psychologists comment on how different Joe is from other autistic kids – they say they can see the results of that hard work. So can I. He will always have autism, but my hope and prayer is that it will be something he manages and something that doesn’t define his whole life. It looks like it’s headed that way. God willing, it will be.

Most autism parents don’t do the hard work. I can’t blame them: It’s HARD. You have to face the autism and your own demons about it. You have to give every ounce of yourself to it. You have to spend time (lots), money (lots), and energy (all). And then it’s a crap shoot, because maybe it will work and maybe it won’t.

Because I’m in that world I know a number of autism kids, and it’s obvious who has been worked with and who hasn’t. The one who makes my heart ache the most is an 11 year old boy who desperately wants to connect with people. Not all autistic kids even want to connect – but this one does, and he’s never been coached. Human dynamics has never been broken down for him. Thus he is reduced to asking a isolationconstant barrage of annoying questions like, “What’s your favorite number?” Or “Which ‘g’ word do you like best?” Unless something changes, this kid will never have the deep connection with others that he craves – and when you desperately want connection but can’t access it? That must be a terribly sad thing, and I fear the worst for him.

On the other hand, I know a couple of other autism couples who have done major work with their kids, and yet their kids won’t ever fit into society’s standards of “normal.” Still I’m positive that, without that work, those kids wouldn’t be nearly who they are now. And I think they have enough skills that they will find their place, and their own, in this big old world.

There is a time to work like crazy, and then there is a time to stop. I wonder what would have happened if I’d followed that doctor’s advice and taken time for seclusion even when life’s waves were tsunami-like. I probably would have managed the anxiety better. The rest would have been so good for me, and stepping out of the storm to get a little perspective, to dive into Spirit, could have made a big difference.

But it was what it was and, with a ton of grace, I am now able to enter seclusion. Sitting here in the quiet, with nature’s beauty all around, I am grateful. Not just for this moment but for the whole journey. Though I never would have consciously asked for it, autism has taught me so much, and through it I have become more trusting, more aware, and more compassionate. So thank you, God. Please don’t do it again to me — ever! — but thank you. 🙂

Namaste’.

Autism and Spirituality: the Dance

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