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Joseph came home from school today and marched right upstairs to his room. “Do NOT come into my room, Mom!” he instructed me — several times over the next hour. I could hear him in there playing with his trains, which we hadn’t gotten around to putting away Sunday evening. Toy trains, being something of an obsession, are usually restricted items, so naturally it was exciting to Joseph to enjoy some forbidden fruit.

When an autistic child tells you to leave them alone, it can produce a perplexing amount of emotions. I went back to the educators who came to our house for a first look at Joseph at age two, when we initially suspected autism. When they left, they instructed us to stay in his face — to not allow him to retreat into his own world. No private time, they told us. And I remembered how Temple Grandin’s mother would let her stim (in this case, I believe it was flap her hands) for only half an hour after school before hauling her out and putting her to work, learning and interacting.

I am an introvert. How I prize my alone time, my quiet time. If I don’t get it for a while, I have a melt-down; I really do. I believe that Joseph has at least the same need  for space — if not more.

This was one of those times when I wanted the manual. You know the one: It’s entitled How to Work with your Autistic Child for Their Maximum Benefit.

Joseph’s gone in and out of train obsession since he was two. It used to freak me out, as it was all he’d think about, talk about, watch on video, and play with. That’s why we ended up restricting toy train time.

This time it’s slightly different. Though he’s thinking about trains and talking about them a lot, he’s engaged in other parts of life, as well. He’s goofing around with our dog and he’s wanting to go swimming and he’s excited about an upcoming vacation.

Still, trains rule all as his Number One Love.

We have a friend, a guy in his 50s, who loves trains like that. He had an extra room built on his house which he filled with model train tracks and trains. On weekends his buddies come over and they run trains together. He goes to train shows and train exhibits. His wife comes along sometimes; she thinks it’s funny.

Joseph will be like this man. There is just something about trains that he adores. It will be a lifelong passion. It’s not the way I choose to spend my life,  but it is his life, not mine. I can live with that.

Joseph is not figure-outable right now. In some ways he seems to be regressing: train obsession, more jerky movements than usual, more flapping. In other ways he seems to be progressing: finally enjoying board games, understanding his math, conversing a little better. Maybe this is a healing regression. Maybe not. I’m tired of trying to figure it out.

I don’t have the manual, so I think I’ll just release it and leave God’s business to God.

I’m even going to give myself some slack for not hauling Joseph out of his room and making him interact with me this afternoon. Sometimes you’ve got to put aside the (imagined) manual and go with your gut. My gut said, leave him be — though I did have him put away the trains this evening.

When you have a kid with autism, you can drive yourself crazy really easily. I never should have taken him to that noisy concert when he was a baby; I should have had him diagnosed earlier; I shouldn’t have done vaccinations; I should never let him have too much alone time.

But there is no manual, and much of Joseph’s, and perhaps anyone’s, autism is simply not figure-outable. Because of this, I try hard not to should on myself. Part of the divine perfection of this journey is that I’m learning to release things more easily rather than to flog myself with them repeatedly.

All this to say, Joseph and I had a lovely, quiet afternoon. We came together at times but also spent a lot of time apart doing our own thing.

And God said, It was good.

Or, at the very least, I did.

🙂

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A tan, a memory, a view, a photo: There are many great things that you take home from a vacation. One of the most powerful gifts we received on our trip was a new perspective.

You see, as we were packing up for Maui we told Joseph that, since we were doing only carry-on luggage, he could  bring just two small toys along. He chose his two newest trains, procured just days before we’d left.

And that was ok. On the flight over, those trains provided some amount of entertainment for him — and later, when we’d settled in at our friends’ house,  they brought him some sense of familiarity and he played with them here and there.

Now, as I have mentioned in previous posts, Joseph is a trainiac. He loves all things trains, and his favorite pastime is to lay out those wooden train tracks and make the trains go on them. It’s basically his default behavior. So it was a big deal, for all of us, that he didn’t have enough train stuff around to occupy his attention for long.

It was, in fact, a great thing. Without trains exercising their massive tyranny over his mind, Joseph started to use his imagination in other ways. For instance, one evening he assigned Blue Eyes and me the role of the little kids at his preschool. As our teacher, he put us down for nap, came in to check on us and then, when it was time, he roused us and got us up out of bed.

There were many other ways where he was simply more present and available to us than he’d been in years.

Then it happened. A wonderful friend and her child, who live in Maui, came over to visit. My friend thoughtfully brought some toys to leave with us while we were there. Why didn’t I tell her not to bring trains? I guess because I didn’t think that her kid — a girl — would be into them. But — sigh — she was, and so when they left, we had about 8 trains sitting on our floor.

I think that sometimes Divine Mother makes things really obvious and exaggerated, so that we can be sure to get the point. In this case, we got to see how the presence of those trains deeply changed the fiber of our interactions with Joseph. Suddenly there were these huge obstacles between him and us; things we had to peer around, compete with, and play second fiddle to.

And there was no doubt about it: in the final score the trains won, and we lost.

I hear that Thomas the Train very specifically markets their products to autistic children. If this is true they are, unfortunately, brilliant at it.

A number of years ago, when we first started RDI, we had packed up all of those  blasted trains and put them away in a crate up on a shelf. We took them down only occasionally, because it was obviously an obsession for Joseph. But as time went by, we got lazy and the trains become more and more available to him. We didn’t really notice when the obsession started taking him over.

However, the difference between Joseph without trains and Joseph with trains during our trip created too much of a contrast for us to ignore.

So today we met with our RDI consultant while Joseph was in preschool. We explained the whole train thing. We talked about wanting to pack them all up again, free Joseph from his obsession. We wanted to take all his train books away, as well. I explained that my visual image of this is like removing cigarettes from him — that’s the kind of harm these things are inflicting on Joseph.

Our consultant was with us 100%.  Do it. Do it now, she told us. Not slowly or gradually, but in one fell swoop. The two of you should sit down with him this afternoon (presenting a united front), and explain why you’ve done this.  Expect him to cry, to grieve. Then have a low-key activity ready that you can do together. Take the trains down once in a while, but don’t let it be a regular thing anymore.

Fearing the worst, I stepped into Blue Eyes’ truck as they were pulling in from school. We chatted a bit, and then we explained to Joseph what we’d done, and why. We tried to emphasize that we’d done it because we wanted him to play with us — not with his trains.

It was as Kelli predicted. He cried, first with real despondency. But, as hard as it was to see him grieving, I kept getting the image of Joseph puffing away on cigarettes and me finally removing them from his reach. This made me strong.

Truth was, he got over it surprisingly quickly, though I’m sure it’ll come up again and again as he goes through withdrawals.

I do not mean “withdrawals”  humorously; I truly think that this is a serious obsessive addiction for Joseph, and that it is not going to be easy for him to give it up.

But through the afternoon and evening we kept Joseph doing things with us. He helped Blue Eyes clean the fish tank and then I played tour buses with him. The evening culminated in Blue Eyes getting out the guitar and the three of us singing Christmas carols. We felt like a real family, where every one was a  fully participating member. It has been a long time since we felt this way, and it feels so g-o-o-d.

So the parents have stepped up to bat. The kid seems happier already, though I know that his pain will come and go.

What we did today was to steer our boy away from choosing Door Number One: the non-people door. We helped him to choose Door Number Two — which, though less predictable and more uncomfortable than the world of things, is nevertheless a world of infinite dimensions, nurturing connections and richness.

It was a small step for our boy, but a huge leap for his potential to develop. We are feeling proud and competent, and I think that Joseph is already reaping the benefits of more parental attention.

Because of this change, he is a changed boy. He is learning that there are many other fun and interesting ways to interact with  the world: the wondrous, unpredictable world of non-trains.

Autism and Spirituality: the Dance

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