Isolation and Autism

Like most parents with an autistic child, I have read a lot of books on autism. It interests me how few mention the isolation factor, because to me -- and my autism friends -- it's huge.

When Joseph was about 1 1/2 and the autism became really dominant, going places turned into a huge problem. He would either scream bloody murder or just flee the scene -- running to the nearest fence, where he could stim as he ran back and forth along it. He could do this for up to an hour. If I tried to drag him away, he'd scream his lungs out.

It got really embarrassing, and really frustrating. There always had to be two of us if we wanted to attend a gathering -- family reunion, parade, etc. -- one to chase the kid and one to actually attend the gathering.

And if Joseph screamed, everyone would turn to look (trust me, you couldn't miss that screaming)! The only way to calm him down was to leave. Sigh. So, after a while, we just stopped going places.

With the hindsight of understanding, I now know that going places, especially unfamiliar ones that included lots of people, was extremely difficult for him. And stimming -- repetitive motions -- calmed him down.

But at the time it was just rough. Blue Eyes and I snapped at each other a lot. We missed our friends. We missed our life. We thought we'd be stuck forever, the 3 of us, in our house, and that was that.

Is there any wonder that autism marriages have an 80% divorce rate?

I remember later on, at a support group with other autism moms. The program director of a children's services dept wanted to meet with us to talk about our needs. One of the things she offered was classes about parenting special-needs children.

"But how do we get there?" asked one of the women. "We have our kids to look after."

"Oh, we offer childcare," answered the woman.

We all practically screamed at her simultaneously: "Chilcare doesn't work for our kids!!"

That was it in a nutshell. We could barely get support because we couldn't leave our kids almost anywhere, with almost anyone. And even the professionals couldn't understand that.

That, my friends, is what made today so very special.

We have amazing friends. We all share a spiritual bond, whatever our path, and we've known each other for many years. During the summer these people gather for a monthly potluck and pool party at one of our friend's homes.

For over three years now, we haven't been able to attend these gatherings. Joseph just plain hasn't been ready. But today, we felt he was ready, and we went.

We were driving along and Blue Eyes and I agreed that, if we stayed an hour and things were very positive for Joseph, we would consider that a great success.

But we stayed 2.5 hours! And Joseph had a fantastic time! We had some hurdles -- namely, lots of dogs. Joseph isn't quite over his fear of strange dogs. But he dealt with it, which was amazing.

He enjoyed the company of the two other kids who were there. A bunch of us played Ring Around the Rosie together many times, and Simon Says, and all sorts of other silly games that you play when you're hanging out with 5 year olds in a pool. Joseph joined right in with us. He even led Simon Says a few times, telling us to "Rub your bellies!"

No one said anything because we were right in front of Joseph, but there were many unspoken messages between us. Messages like, We are so happy you are here and we are thrilled to see Joseph doing so well. One friend did say, "it's a miracle."

Perhaps it is. And here's another miracle: Looks like we get to join the human race again.

OMG

We are on a roll -- a gluten free one, but nevertheless a roll! ;-)

I brought Joseph to preschool today and stayed a while, which is what he likes me to do. It's been remarkably interesting to watch him during these transition periods.

At first, he'd run into the "baby room" (it's a mixed-aged school), where he could hide from all the other kids. After a while, he'd stay in the main room with everyone, but immerse himself in the trains or some other solo activity.

Now, 8 months into it, we are walking up toward the door and Dylan, another 5 year old, sees us through the window. He exclaims, "Yea! It's Joseph!" In we go. Joseph doesn't even stop to take off his shoes or wash his hands -- he is so excited to see his friends that he immediately runs to them and starts to interact.

Joseph's teacher and I end up in the baby room having a discussion about Joseph. After a few minutes Dylan and Maya run in, giggling like crazy, and crawl under the little trampoline.

The teacher, ever mindful about having Joseph included, says, "Why don't you find a way for Joseph to play this with you?"

Maya replies, "He's chasing us!"

And indeed, next comes Joseph, running and giggling, into the room. He finds the kids under the trampoline, climbs on top, and starts jumping in an effort to get them out from underneath. Everyone is having a good giggle. Then the two underneath crawl out and run, and Joseph picks up the chase again.

His teacher tells me she sees this level of interaction all the time now.

Life is good. I feel so hopeful.

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops -- at all.
(Emily Dickinson)

I put the poem, above, on my wall years ago -- shortly after the diagnosis. It has seen me through some dark times.

And now it's seeing me through some pretty happy ones.

RDI in Action

It's hard to explain RDI. Basically, it breaks development into thousands of tiny qualitative steps. A consultant assesses where you child is developmentally, and then the parents work with their child to take the next few tiny steps, which RDI calls objectives. Once those are mastered, you get the next objectives.

I've been to a number of RDI parent workshops, and the one thing that always comes up between us parents is what we call RDI guilt. Because RDI i s totally parent-centered, this is the guilt that arises because none of us feel that we do enough RDI with our kids. I have been known to suffer from RDI guilt -- but not today!

The inspiration started because Blue Eyes (husband), Joseph and I were at a festival in town. There was a bouncy house there, and we walked over and watched the kids jumping for a few minutes.

Now, let me explain that only once has Joseph been in a bouncy house, and that was at a private birthday party with only 3 other kids in attendance. Any other time we've encountered such an animal, Joseph has adamantly refused to have anything to do with it. Strange kids, odd set-up, lots of noise: forget it.

So I thought we'd watch and that would be it. But when the kids' turns were over, Joseph couldn't wait to go in. Blue Eyes went over with him and helped him through the little door.

But then it happened. Joseph started to scream, "I want out! I want out!" and Blue Eyes helped him out. Well, we tried, I thought.

Then I watched all that RDI coaching click in for Blue Eyes. Encouraging competency in these kids is a big part of RDI, and Blue Eyes didn't give up and let Joseph feel that he just couldn't do it. He got Joseph to start jumping on the little inflated part just outside of the bouncy house door. I was watching from across the way, and I could see Joseph's face go from unhappy and frustrated to exhilarated.

Then, with Blue Eyes' encouragement, Joseph crawled back in the house. Blue Eyes held his hand through the entryway, and Joseph jumped again. It wasn't long before Blue Eyes was out of the picture, and Joseph was having a great time inside the bouncy house. He enjoyed it just as much on his second round!

In RDI terminology, Blue Eyes scaffolded Joseph by helping him until he could do it in his own. It was some of the most beautiful scaffolding I'd ever seen -- and all the more so because it was entirely spontaneous.

I was so inspired that, on the way home, we stopped to buy lemons and honey. Once we got home, Joseph and I made lemonade together. RDI is all about interaction and apprenticeship, so it was easy to use those principles as I coached Joseph in juicing the lemons, filling the pitcher with lemon juice and water, pouring in and stirring the honey, and of course tasting as we went.

It was a very satisfactory experience for both of us, especially as we enjoyed our lemonade together afterward.

And, after that, we cleaned up his old paint cups and filled them with new paint. This, too, was very interactive and encouraged feelings of competency.

So today I am a rockin' RDI mama! And Blue Eyes is a blow-me-away papa!

I do love RDI, when I'm not feeling guilty about not doing enough of it. One thing I love is that it gets you out of the compulsion to drive your kid here, there and everywhere in order to see if other people (the "experts") can fix him. It scaffolds the parents so that they can work with their child in really amazing ways.

When talking about this journey of autism, RDI is fond of saying, "It's not a sprint -- it's a marathon."

And on this marathon, we find that, whereas typical kids may get something with just a few repetitions, our kid may need 500 times the repetitions that the typical kid does. BUT. We still get there.

And every time we end the day feeling encouraged, hopeful and competent, it sets us up for a great tomorrow.

"He'll be fine."

I had lunch today with a group of my wonderful woman friends. They are very compassionate people, so of course they asked for an update on Joseph. The woman next to me, in particular, wanted to know how he was doing in terms of being age appropriate.

I repeated the numbers his preschool teacher had given me (age 5 cognitively, age 3 socially), and Anna was impressed. She assured me, "He'll be fine." I disagreed, arguing that I didn't know if he'd be fine -- if he'd ever be a functioning member of society, if he'd ever have a friend, ever get married, etc. She insisted, "He'll be fine!"

I looked at Kas, sitting across from us. Kas' grown daughter is going through some major challenges. "You can't know." she said. "You can't possibly know."

And that's the truth. I can go 24/7 working to make Joseph better. I can do RDI 'til I'm blue in the face and shoot him up with B12 shots and take him to OT and feed him the right foods and etc etc etc -- and STILL I can't possibly know.

It's out of my control. When I realized that, not very long ago, it was a huge exhale. I am not in control. I can do my best, but the rest is God's. I can attend to my business, but I can't do God's business.

And the truth is, even my business is God's business -- if I'm doing it the way I hope I am, which is listening to guidance, watching for signs, meditating in order to stay connected, praying for help.

This makes even the hard times easier. Without God, it's no fun at all. With God, it's a divine dance, a divine mystery. I don't know -- and I can't know -- if Joseph will be "fine." As Byron Katie told me, normal people aren't that happy either. So what is "fine?"

So what do I pray for in this moment? The ability to let go and let God. To feel Divine Mother holding me, holding my husband, holding Joseph in Her ever-loving arms. To see Joseph in his beautiful perfection and not wish he was different. To see how the Divine flows through him so very wonderfully.

They say that, when we step out of a lifetime, it feels like it's about the length of time we spend seeing a movie. We look back and say, "That was a good one! Funny and insightful." Or whatever.

I don't necessarily want this movie to be a triumph over the odds. I want the main character to open her heart so widely that LOVE flows through in an unstoppable current. And that, I suspect, is the motive behind all of God's business.

Unlovableness

Every Monday for the last few months now we've gone to Saddle Pals, where Joseph gets to ride a horse flanked by 3 volunteers and 1 supervisor. It's an amazing program. Joseph used to be absolutely terrified of animals -- even our pet cat -- and this has changed his relationship with animals forever. He is still a little cautious, but always happy to greet a pet now. And he loooovves riding "his" horse, Chelsea.

Ater the first month of Saddlepals, his volunteers were coming up and telling me how amazing his progress was. The coordinator confided in me that Joseph's volunteers were in love with him. When we had to switch our shift, all the volunteers switched too so that they could still be with him.

And yes, he is making progress, and yes, he is cute. But I watch Dan, who is 12 and who is more seriously impaired than Joseph. I watch him up on that horse, flapping his hands and making that cooing sound that only autistic people seem to make.

I go over to say hi to Dan's dad, who I know casually because we've attended RDI classes together. He opens his mouth and out comes worry after worry about his kid. First it's about horseback riding: he's been at this for 5 years now and he's LOUD on the horse. Shouting is not allowed on a horse, so he gets taken off a lot. And he moves around too much and gets taken down for that, too.

I look at Dan's volunteers. They are strong and firm with Dan, and there is a harshness to their voices and a hardness in their faces. It is hard to love Dan. It is hard to even like Dan, and I am sure that the volunteers have tried. And I wonder, did they love Dan when he was little and cute?

Dan's father goes on about how incompetent Dan feels, and how he dreads failure so much that he seems to sabotage himself just to get failure over with.

It is tough, this thing called autism. And, though Joseph won't ever be as impaired as Dan, he won't always be so small and cute, either.

Although the volunteers attending Dan are hard-faced, Dan's father is not. Dan's father looks as though he is being tenderized by the Almighty Tenderizer. His face reflects his heart -- soft, vulnerable, open, afraid and trusting.

Joseph's future is one of those things I both worry about and lay at God's feet. How can I know what his future will be like?

I take a deep breath and come back into the present. He is so cute, so sweet and so happy. Some of those higher-functioning autistic kids are so cute, and he is one of them. Thank you, God, for that.

And thank you for this moment. I will endeavor to stay in it.

On Non-Attachment

Ok, so now Joseph is doing so much better. He's done one of those leaps in development that are very exciting, especially for parents of special-needs kids. His teacher tells me that, at circle time today, Joseph shared excitedly about last night's thunderstorm. In previous circle times she had tried to get him to share, but he'd only answered yes or no in the quietest possible voice. So this was exciting.

But it's not only this one isolated incident. It's his whole beingness -- he's so present and engaged. He's also getting feisty and insisting on what he wants, which is new for us and creates a whole new parental dance.

Now. In yoga there is a huge emphasis on non-attachment -- on being so centered within that no external condition can pull you away from your inner peace.

I used to be pretty good at this. Then I became a mother. Then my kid was diagnosed with autism. Now I find that, especially when things are going really well with Joseph, I get so happy. Like, pulled-out-of-my-center happy.

And I wish it wasn't so. I wish that my connection was more with my inner joy. I wish that this external condition, which will always be fluctuating somehow, was not so strongly affecting my internal environment. I don't like riding the emotional pendulum.

But what a strong practice it is. God is obviously chiseling me according to his perfection, and I get to see where my "lack of perfection" still lies!

And, in my own defense, we parents are obviously given a heaping dose of attachment to our children -- by that same divine force that is chiseling away at my imperfections.

So I am quite content to watch the whole thing closely, and learn by watching, and hold it up in prayer and meditation, and have faith that life is unfolding just as it should.