Where We Are Is Where We Were

September is a big month around here: Oliver turned five, I turned thirty-eight, Nik turned forty-nine, and our 6th wedding anniversary is on the 29th. That, plus the change in seasons has me thinking a bunch about change.

What a difference a year makes, huh? And two years? Well, it would be hard for most people to comprehend the changes we've been through over the last two years. In a lot of ways, the trajectory has been at a solid, forty-five degree angle. But in some ways it has been an arc, and we are back where we were before Oliver was diagnosed. In a good way.

First, the forty-five degrees. That's Oliver. Wow, that kid is amazing! He is really developing a bit of independence. When we walk together now, he refuses to hold my hand -- as any five year old might. But the difference now is that I can let him walk by my side and not worry (well, almost) that he will dart into the street or run away from me towards something that catches his eye. The other day we walked together to my mother's house. She lives about a half mile from me and at some points he was nearly a block ahead of me. And I wasn't worried. If I needed to I would call out: "Don't get too far ahead!" and he would stop and wait for me. A year ago this would not have been possible. And when we go to a store or any other busy place, I don't constantly have to keep my eye on him. He knows that he needs to stay with me. Sometimes he wanders away a bit but he always comes back. Going places is so much less stressful than it used to be.

Yesterday we went swimming at the new pool for the first time and I just stood back and soaked my boy in. Now that he has the basics down he is swimming really beautifully -- not just the doggie paddle but something that looks like the back stroke and the side stroke. He is also swimming under water a few feet at a time. He is so extremely capable in the water. It is such a joy for me. Then later in the evening I decided to take the boys for a bike ride. It was garbage night though so the sidewalk was dotted with garbage cans the entire length. But Oliver and Sam both navigated around all the obstacles and only fell a couple of times. Each time they both jumped up, picked their bikes up and got right back on. Sami kept saying: "I'm riding with my brother!" It was so cute. Then I thought back to the many, many hours we spent trying to teach Oliver to pedal and how he would just sit there, on the bike, not moving a muscle. I wondered if he would EVER learn to ride a bike. And now here he is, incredibly capable on the bike.

And then there is the arc of development. That's mine. There was a time, more than two years ago, when there was never any doubt -- any question, even -- that I was the expert on my child. I never would have thought to ask anyone for input on my parenting. I am a believer in attachment parenting and that's what I did: I breastfed him until HE chose to stop at 2.5; He never slept anywhere but with me; I carried him close to my heart in a sling until he grew too heavy. I never let him cry. I wanted him to feel secure, attached, not alone in this world. That was the best way, I thought, to help him feel confident enough to develop independence. I never would have thought that someone understood Oliver better than I did.

But then the diagnosis came along and my grasp on motherhood loosened. Suddenly there was someone else who claimed to understand Oliver better than I did. When I would talk to her about something particularly troublesome she would tell me what to do. I wanted her to tell me what to do. Live through enough 45-minute long tantrums that end with you and your child both covered in vomit and you'll know what I mean. I was glad she was there and she was glad to share her expertise with me. And yet, I now see how much our parenting strategies changed and how this person's appearance subtly shifted the dynamics in our house. I see how vulnerable we all were and how we lost something intangible and yet so valuable.

I came to really resent this person and am glad that she is no longer present in our lives. And don't get me wrong: she is no monster. She is acting from the heart. She believes she is helping families. But from our experience I also now see that these "experts" hold a tremendous power over families in their most vulnerable state. To not recognize that is almost criminal.

Anyway, back to the arc. It took me awhile, but I have finally reclaimed my hold on motherhood. I put our bond, our relationship, first and know that Oliver will go as far in life as he is able. It is my job to see no limits, only potential. The experts, those who label and classify him, don't know shit. Because he is not apart from us, his family. He is a part of us, his family. It took me two years to fully embrace my instinct and intuition again and sometimes I still falter. But overall, I must say, it feels good to be back where I started.

We Might Have to Make Do With the Bathtub

UPDATE:

I couldn't let it go last night. I kept asking Nik to describe for me how everything transpired at the pool. There were a lot of tears, a lot of protests and through it all Oliver kept his hands clamped tightly over his ears.

I wanted to say that we would just keep trying but if the noise were truly that upsetting I wondered if attempting to "de-sensitize" him would just be cruel.

So before going to bed I sent off an e-mail to the director of a local health facility describing our situation and asked if they would consider donating a membership to us (it is quite expensive). In the morning I got a response asking us to come in, get a tour of the facilities, and fill out an application. It isn't a sure thing because our request has to go before a committee, but I'm so glad I thought to ask.

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I've been thinking lately about how to organize our time now that it is just me and the kids at home everyday. It's easy to just kind of go with the flow and not worry about structure. But I decided a few weeks ago that I needed a bit more organization to make sure that the time we spend together is more purposeful. So I sketched out a rough schedule for the week and given how much Oliver has come to love the pool, swimming figured prominently in the week.

But what is that they say about the best laid plans?

The pool opened today under a bubble. And Oliver would not go inside. Nik was with the two boys and reported that he tried all sorts of strategies to convince him that it was OK. But once inside Oliver could only curl up in a ball with his hands over his ears and a towel wrapped around his head. Apparently the sound of the air pumps keeping the bubble inflated is too much for him.

I'm not sure if we should try again. I may give it a shot and see if his sensitivity to the noise might lessen if he grows used to it.

Otherwise, I'm afraid I'll have a fish out of water for the next nine months.

Just Who Do I Think I Am?

Do you ever have days where you think you just don't stand a chance? Days when you just want to throw up your hands in defeat? I'm having a month like that.

Overall, I would say that I'm a fairly positive person, particularly so when I write or talk about Oliver and autism. In my opinion the real tragedy about Autism is that it is so hard to find positive stories about it in the media. Except of the "I saved my child through the strength of my love and my steely determination" variety. So I try to do my little part to spread positive messages. And that is one reason I'm so happy for the blogosphere: real people telling real stories that show the tremendous variety of human experience in every life.

But lately I've been finding it difficult to remain upbeat.

When we decided to keep Oliver out of school this year I felt pretty good about that decision. We'll work primarily on communication issues, I thought. And so when the school district also agreed to chip in for some speech therapy each week, I welcomed the idea. A few weeks ago the SLP called and we made an appointment and discussed what goals we would try to work on with Oliver this year. I also asked that she do an initial evaluation since we haven't had one in several years. As our appointment date grew near I was hopeful that the SLP's input would help give some focus to our efforts at home -- you know, professional guidence. But I didn't realize that I had such high expectations until they all came crashing to the ground half-way through our appointment.

And let me just say this, I like the SLP and I'm trying not to jump to conclusions about how useful her input is going to be. But it was hard to find anything positive at the end of that first hour. First, she was sitting less than a foot from Oliver while she was administering the evaluation and she was talking at the top of her lungs as though he were deaf. Later, she asked if there was any kind of food item that she could use to get Oliver to sit in his chair. She repeatedly grabbed Oliver's chin and tried to turn his head to look at the photos she had laid out in front of her. And at the end of the session she said that she thought she should concentrate on teaching Oliver common vocabulary by getting him to label pictures.

But here is the thing: I had already spent a great deal of time explaining to her my opinions about Oliver's problems with language and why I think verbal behavior isn't the right approach in our case. I have never really understood why Oliver can't -- or won't talk -- and no one has ever been able to explain it to me either. One "expert" told me that Oliver wasn't talking because he wasn't MOTIVATED to speak. That realization completely flabergasted me until I realized that it was completely wrong. There are so many times when Oliver very clearly wants to communicate with us. When he is desparate to communicate something but just can't. And then there are exchanges like this:

Me: Oliver, what is this?

Oliver: perfing.

Me: These are glasses, Oliver. Glasses.

Oliver: Glasses.

Me: What is this?

Oliver: Perfing.

Me: No, they are. ..?

Oliver: Mmm. (From our studies of the phonemes, this is the sound of the letter M.)

Me: No.

Oliver: T. (Again, the sound that the T makes from our phoneme studies.)

Me: They are glasses.

Oliver: Glasses.

And let me just say that Oliver knows what glasses are. Sometimes he can produce the word on the first try and sometimes he can't. If you pointed at the glasses across the room and said: "Oliver, bring me the glasses," he would know what you were talking about and bring you the glasses. So, in my opinion, Oliver's language problem has more to do with being able to retrieve the right word when he wants to use it. Is this then a neurological issue or a speech issue? Or both?

I don't know the answer. And that is just the point. I don't understand fully what the problem is but I do know that the issue is one of communication, not just speech, and that teaching him to label pictures is like using an eye dropper to water a tree.

Maybe the SLP is on the right track and since I'm not an expert in Speech Pathology I can't say much about that. But I do know, after watching her work with Oliver for an hour, that she is looking at him purely as a non-verbal, autistic child with a set of challenges that are sure to get in the way of her teaching him to talk. She is not looking at him, she is looking at how he "presents". So a big part of me wants to just cancel the services all together. I don't think it will help. I think it will be stressful if she continues her agressive way of working with him.

But then I stop myself and have to ask: Just who do I think I am? I'm NOT an expert. I don't understand why Oliver can't seem to find the words when he needs them. And I certainly don't know what else I -- or anyone else can do -- to help his brain make the connections that it needs to so that he can decode language and understand the nature of communication. And then I get all wrapped up in self-pity because not only do I not know what to do but I also don't believe that any of the experts know what they are doing either.

I'm going to give the SLP a chance. I'm going to sit side-by-side with them and make sure that she respects his personhood and his unique needs and I'm going to refrain from judgement in the short term.

And in the long term I'll try to keep from throwing my hands up in the air. Because that surely never helped anyone.

More on My Fish

I really can't believe that September is here already. Is it just me or did summer go amazingly fast? I know, I'm slow coming to this point. All of you have been preparing for the turn of the calendar page for weeks. But since my kids aren't yet school age (except for RT and he is SO low-maintainance) we don't have any formal transitions to make so it was quite easy to deny that summer was actually coming to an end.

And then? The pool closed for the season.

I can't begin to describe how incredibly happy I am watching Oliver in the pool -- and indeed, how incredibly happy he is with himself. Swimming is the only thing so far in life that Oliver has really wanted to do for himself. It is the first thing that he has undertaken of his own initiative. I don't have to push, praise, cajole or motivate. He is persistant because he wants to figure this swimming thing out. Each time we go to the pool I see him try something new and he tries it over and over again until he gets it right. First doggie paddling, then great cannonball jumps from the side that took him right to the bottom of the pool. Then, last week I saw him relax in the water, laying back, pointing his chin to the sky and slowly letting his body rise to the surface. He did it again and again, each time floating for just a little bit longer. A few days later he was still practicing this new skill -- but the BEST part was that each time he really felt himself floating he picked his head up with a huge grin on his face and looked around to find me as if to say: Do you see me, Mom?

On the last day at the pool he began to let his head slowly sink beneath the surface, eyes wide open, and once under the water he reached for my hands and swam a bit towards me. At first when I saw him going under I thought he was so exhausted from all the swimming that he was drowning and I pulled him back to the surface. But then I realized that he was concentrating deeply, preparing himself, in the seconds before he slipped under the water. (Still, it was hard for me not to want to drag him up!). A few times he even made a break for the diving board which sits atop twelve feet of water! I know he will be ready to jump long before I am ready for him to jump!

Luckily for us, the pool will re-open under cover in two weeks. But I'm pretty sure it will be a LONG two weeks.

This RDI Thing. ...

It's like magic, it really is.

Before we got started with our consultant, Nik and I sat down and watched the five hour intro to RDI DVD. I remember saying to Nik that if Oliver could even accomplish a little bit of what we saw on that DVD then I would be happy. At the time, so much of it seemed out of our reach. Out of Oliver's reach. But in the last 8 months Oliver has come so far that I can hardly remember what it was like when I had to chase him for every article of clothing that I wanted to put on him.

Yesterday, Oliver and I played a game together that we haven't played since he was just a little guy, back before the regression when there seemed to be so much more social give and take with him. And the best part is: Oliver initiated the game. As I was sitting on the floor in the hallway, Oliver rolled a big yellow truck right to me and then sat looking at me, waiting for my response. Surprised, I rolled it right back at him. He turned it around and the game had commenced. Soon Sam wanted in on the action (of course!) and the three of us spent at least 10 minutes rolling the car to each other. The whole game was totally dynamic. We often didn't know who would get the car next. Sometimes it wouldn't go far enough or in the right direction and someone would have to get up and get it, correcting the action. Usually that was Oliver, and he always did it without being asked to. He was definately doing more than 50% of the action to keep the game going. Nik and I were stunned. Later, after the game kind of collapsed because Sami was being such a pain in the neck, Oliver found another truck and spent some time rolling them both around the hallway, deep in play. Also a first.

I know that to some this won't seem like a big deal. But trust me, it is. We have been working on coordinated actions with Oliver over the past couple of months: turn taking, doing the same thing together, doing the same thing in parallel, doing different, complementary, things to complete the same activity, etc. And it has been slow going, especially the turn taking part. But here today it all came together as if by magic. And Oliver initiated the game. And he often did all of the work to keep the game going. It was breath-taking! And heart-warming. And motivating!!