Red Truck

Yesterday afternoon the boys and I were making yet another trip to the hardware store. I've gotten a home improvement bug this spring and so the whole house is littered with tools and tape and just when I think I'm good to go I discover that I need something else. But on these rainy afternoons it gives us a good excuse to get in the car and go somewhere. So there we were yesterday, all strapped in our Ford station wagon that sports the new bumper sticker proclaiming that: This Car is on a Low-Carbon Diet. My mind was on other things, really, when I heard the words "Red Truck" from the back seat just as a red truck passed us in the other lane.

It took a second.

I pushed away what I had been preoccupied with. No, that wasn't Sammy, I thought. That was Oliver. Did he say 'Red Truck'? It sounded like red truck. And there certainly was a red truck. Oliver said 'Red Truck'!!!

Now, I often say that Oliver is mostly non-verbal. He can talk and he does communicate certain needs reliably. But mostly his language consists of the phrase: "I want" followed by some noun. He can also sing a couple of songs and can fill in the words to stories he is familiar with. But most of this is either prompted or driven by his desire to have his needs fulfilled. Which is OK, but it doesn't tell me a whole lot about what goes on inside his head.

But THIS! This 'Red Truck'! This is something completely new and wonderful. Oliver saw something in the environment that caught his eye and he labled it to share what he saw with the others in the car. That's communication. Spontaneous communication.

There's no telling where we'll go from here!

Changes

I know that I write a lot about RDI these days and that is because I have come to feel so passionate about it. For us it is right thing to do. Last night Nik and I sat on the couch and reviewed the videos from our first two weeks. Seeing Oliver now you wouldn't believe that those videos were taken just four months ago. A big change that we've seen with Oliver of late is an increase in his ability to communicate. Oh, he isn't speaking that much more but he is communicating and I do believe that we are starting to have our first conversations, which is so exciting. Who cares that hardly a word is spoken.

Here is an example of an exchange that we had yesterday:

Standing at the back door and holding it open an inch or two Oliver is poised to go outside. "Oliver, lunch will be ready in two minutes."

Oliver looks again outside and inches the door open a bit further. I clear my throat, he looks up at me and sees me shaking my head 'no'. He then smiles and vigorously shakes his head 'yes'. I shake mine in the negative one more time while simultaneously setting a piece of pizza down on the table. End of conversation.

Short but oh, so sweet!

Some other changes that we've seen since we started doing RDI:

Oliver is starting to be able to make choices. When presented with a number of books he will study them for a moment and then intentionally choose one. A few months ago he would have sat immobile if presented with a choice.

He is also now independantly getting things to eat -- even if that means he has to climb up on the cupboards and chairs to get it. I have always left fruit out on the counter so that anyone can grab a snack when they want. But Oliver never before took the initiative to do it -- even when he was really hungry. Now, nothing is safe. And one day I even found him hiding outside and trying to get a popsicle wrapper off! I was so stunned that you could have knocked me over with feather.

Another exciting development is that the range of toys he chooses and his manner of playing is starting to vary a bit. I am starting to see more and more elements of pretend play which is kind of fun to watch.

We still have a long way to go, to be sure, but at the moment anyway it all just seems so very good.

Back to the Beginning

The end of March punctuates my year like no other occasion. No specific day is marked and no single event, really, is remembered. But still, there is something with me on these quiet days as we move into spring that is real, if not easily definable. It is one part grief, one part contentment, one part optimism, one part shadow. And although I can't find a way to describe it any better I am happy and it seems fitting that this punctuation -- be it period or exclamation point or question mark -- comes in the spring.

In graduate school, where I studied Anthropology, we talked a lot about the concept of liminality, which is just a fancy way to describe a person who is in a state of being that is between two things. You are no longer what you were but not yet what you will be: a boy participating in a rite of passage into adulthood, a bride whose father has just given her away, a pregnant woman. When I started this blog I felt deeply liminal myself. But in contrast to other periods of liminality in my life, this one was prescribed by neither text or ritual. I was completely unmoored. In one of my first entries I wrote: "We're not quite the family we were and we haven't yet found how all of these pieces will fit together to create the family that will see us through. And as individuals: mother, father, brother, we haven't yet learned how to fill those roles in this new context."

I often think about this and wonder if I am yet the special needs mother that I need to be. Oh sure, I am the mother of a special needs child -- and just the fact that I can put those words in a sentence is evidence that I have journeyed far -- but am I through with the becoming part? Just how long is this process supposed to take and how will I know when I have arrived? Really. This is not a rhetorical question. I want to know.

I think I am getting there, I really do. Yet I still feel as though I have so very much to learn. I still have dark moments of doubt and fear and frustration. But there isn't a mother anywhere that doesn't feel the same way, I'm sure. Special needs or not. And maybe, coming to the understanding that there isn't so much difference between me and any other mother, is why I think I'm getting close to the end of my journey of becoming. My journey, it seems, has been circular and I find myself right back at the beginning where I was just a mother and my boy was just a son.

I emerged from my pregnancy with a beautiful, shining boy; I emerged a mother. At first, to be sure, I was a new mother. And let's just say that it took me awhile to learn the ropes. But learn them I did and I grew to love mothering my little guy. It was only a short time later when a whole new vocabulary of adjectives started to be applied to my son -- delayed, autistic, low-functioning, non-verbal -- and I began to believe that the rules had changed, that being a good mother now required more and different things of me. I read Catherine Maurice's "Let Me Hear Your Voice" and wondered if I had all of the stamina and the courage and the persistence that she did. I wondered if I were really up to the task.

Nearly two years has passed now and I've spent a lot of time trying to figure it all out in lieu of the text and ritual. And what I've come up with is this: the rules never did change. I only imagined that they did. I don't have to be anything more or better or different. I don't have to be Catherine Maurice. I just have to be the mother that I set out to be four years ago when all I ever imagined I'd need was love, patience, a bit of creativity and a box or two of band-aids.

I just wish it hadn't taken me quite so long to get this far back to the beginning.

Stuff. ...

Sam and I have both been sick all weekend with some sort of stomach virus. With all that time on the couch I had a million thoughts going through my head but now I can't seem to pin any of them down into a complete post. So I'm just going to do a brain-dump instead. Here goes:

1. I don't know how it came up but I told RT the other day that I was planning to homeschool the kids and he looked at me incredulously and said: "But they're not going to have any friends!!" I thought that was kind of funny and kind of sweet. It reminded me that to him Oliver is just his little brother. Yes, he has autism and yes, he can be kind of a pain in the neck if you are a teenager and want your brother to just stay out of your room. But he really doesn't fully understand how likely it is that Oliver's life will look much different from his own.

2. Every morning I wake the kids up and as they wipe the sleep from their eyes I open the blinds and say: "Good Morning Birds! Good Morning Sky! Good Morning Tree! Good Morning Street!", etc. Sometimes Sam joins me and repeats what I'm saying. This morning it was Oliver who stood next to me at the window and echoed my greetings. It gives me such high hopes!

3. I took Sam for his 2 year well-baby appointment last week and was surprised to learn that he is only in the 10th percentile for height and weight! He is such a little guy but has such a huge presence. The paper they gave me that tells what I could generally expect for the coming year said that he would soon start speaking in 5-6 word sentences. I had to laugh at that because just after I read it he was heard to tell the doctor that: "Dinosaurs stomp their feet on the ground and go GRRRR!" So much for generalities.

4. It is insane how many extra-curricular things RT is doing at the moment and how complicated it makes our life at times -- especially given that we now only have one car. Guitar lessons: once a week; karate lessons: 4 nights a week; soccer: practice once a week, games once or twice a week; then there are the field trips and the academic extras that come up every other week or so. We need a special teenager calendar just to keep track of it all! And then, once we get the swing of balancing all of this he will be off to college!

5. I'm wrestling with the whole vaccination issue for Sam. I had told myself that I would selectively vaccinate after he turned two but now I just can't decide what to do. Intellectually, I don't believe that Oliver's autism was caused by his vaccinations. But he did get terribly sick immediately following his last vaccinations, lost most of his speech in the next 3-4 months, and his digestive system never fully recovered. Is all that just a coincidence? I don't have the confidence to say one way or the other and so I sit here on the fence.

6. I took a bunch of pictures of the boys the other day so now if I can just figure out how to download them I'll post some.

7. Watched Little Miss Sunshine the other night -- wow! what a great movie! And if I wasn't on the couch being sick, sick, sick, it would have made me want to eat a bowl of ice cream.

Three Times! A Charm!

Two days ago I sent an e-mail to a friend, who understands such things, crying about my desire for Oliver to talk. Sometimes days and weeks go by and I don't really think about his almost complete inability to communicate verbally. This is just the way it is for us. It is our ordinary. Then a day of mourning pops up out of nowhere and just completely knocks me down and wanting Oliver to talk is all I think about. Luckily though it doesn't take me as long to get back up as it used to. And of course it helps to have friends who point out what I already know: We are on the right track and Oliver is growing by leaps and bounds every day.

The same day that I got my little e-mail pep talk I resolved (again) not to be so fixated on the speech thing. And that same day Oliver came running up to me, threw his arms around me and said: "I love you!" clear as day. Three times!

Oliver is a boy of few words. But Boy! those few words are enough to melt my heart and keep me going for a year!

$16 = The Cost of a Good Night Sleep

Thanks to ThisMom I have become an EcoMom. If you haven't yet read about the EcoMom Challenge, you must, must, must. Global Warming is one of those things that keeps me up at night. Seriously. I work everyday so that I can help to ensure that my kids will have a good quality of life in the future yet I worry about what kind of world they will be left with. But I tend to avoid reading or hearing too much about the subject because it just seems so out of my hands, you know? So overwhelming. And that is why I LOVE the EcoMom Challenge. There are 82 million moms in the US alone and if we all make some basic changes -- some of them very easy to do -- then we WILL have an impact. I just love the idea of a bunch of mom's getting together to save the planet! The website includes a list of 10 easy things you can do -- that anyone can do. Go ahead! Have a look.

SO! Over the weekend I went out and bought 16 compact, flourescent light bulbs ($2/each with a life of 7 years per!) and replaced almost all the regular light bulbs in my house. Then I had a little family meeting with Nik and RT and we agreed to make this a priority at our house. I showed them the website and asked them for ideas on what we can do to help save the penguins and the polar bears. We came up with a list of ideas, wrote them down and each of us signed it.

Then we visited this site and calculated our Carbon Footprint -- that is, the amount of carbon dioxide our family produces per year. I am happy to say that we scored in the Much Less Than Average category even before you factor in the light bulbs. Our family produces 31,117 lbs of Carbon Dioxide each year, which still seems like a lot to me. And the cost of that is only $16/month. That is, the cost of purchasing clean energy that will offset that same amount of Carbon Dioxide, is only $16. And that, my friends, makes us Carbon Neutral!

So if you've ever felt like climate change was something that you couldn't do much about and if you are a mother, or if you have a mother, or if you would like to be a mother or if you know a mother -- then what are you waiting for?

What We Found

Yesterday Oliver was occupying himself by running in and out of the house. First to the swing then to the kitchen for a glass of water, then to the sandbox, empty now and filled with leftover winter muck just perfect for boys of a certain age. Then he was back in the kitchen for a handful of grapes, and so on. He was in the kitchen when I happened to catch him leaning precariously from a chair to the kitchen sink two feet away with a glass in hand. I stopped myself from instructing him to move the chair closer or from taking the glass and filling it for him, held my breath and just let him do it.

You see! I’ve come a long way.

Then, after he had a mouth full of water and watched as it dribbled out of the corners of his mouth to his now damp shirt I surmised that he wasn’t really thirsty and we could begin. "Oliver," I said, "let’s see if we can find some eggs!"

Then I waited.

He continued watching the drops of water wetting his shirt. I waited a bit longer not saying anything. After some time and without acknowledging me in anyway, he put the glass down, got down from the chair, walked to the refrigerator and opened it. So much time had passed since my request that I momentarily wondered what he was doing. Then I realized that he was scanning for the egg carton.

“Oliver," I said bending down next to him, "I see a different kind of egg! Look at that!”

He didn’t look at my face and again gave no indication that he heard me but slowly turned instead to look in the same direction and there he spied the plastic egg I had put next to the butter. On closer inspection he saw that inside the egg were two small pieces of candy of his favorite kind which I let him devour immediately.

“Wow! I wonder if we can find more eggs like that? Maybe over there,” I said while looking towards the doors. One door leads to the bathroom and the other to the hall. Oliver took my cue, shut the refrigerator door and went immediately out into the hall. I cleared my throat. He glanced up at me and I looked excitedly into the bathroom. He found the next egg nestled in the empty candle holder next to the bottle of yellow Listerine. In fact, he found a total of 10 eggs yesterday afternoon, scattered all over the house. And as soon as the last one was deposited safely into the little cloth bag that I had given him and Oliver sat happily examining his booty, I dialed the phone to share my joy with Nik: “You’ll never guess what your wonderful, amazing son just did!”

I was pretty hesitant to start the activity. This isn’t the sort of thing at which he normally excels. I couldn’t say, for instance: “I’ve hidden little plastic eggs filled with candy all over the house and now we’re going to find them.” His receptive language just isn’t there yet. And in the past he might have found one egg but not understood that there were more eggs waiting to be found. And until recently he might not have even understood that the other eggs all had candy in them. But this time it all came together and we had ourselves an Easter egg hunt.

Some time ago, probably without even realizing it, I let go of trying to fit Oliver into holidays and events and activities that mark the passage of childhood for other families. I realized that if I wanted to be happy – if Oliver was going to be happy -- I had to fit those things to Oliver if it worked. And mostly it doesn’t work for right now so we skip a lot of things and that is just fine with me. But something about this one little success had me thinking yesterday that just about anything in life is possible. Suddenly I could imagine him on a big green field with a dozen other kids looking for those silly plastic eggs filled with candy I don’t even want him to eat.

If I were a better writer or a better Christian I could probably come up with some seasonal analogy between what Oliver found yesterday and what I found. I'm not sure what that is, honestly. But it was something. We both found something.

From Where I'm Sitting

What is that saying? You know, the one about not seeing the forest for the trees? Sometimes (OK, often) that is the way it works with me. I get so caught up in seeing all of Oliver's challenges that I don't focus enough on how far we've come. And we have come far enough that each time I look up for a couple of minutes I notice that the landscape has changed.

Yesterday I met with our RDI consultant to go over the new objectives. The program has recently undergone a total overhaul, taking it from a linear approach to development to a more 3 dimensional model. It more accurately reflects how a typical child develops. And BOY! is it complex. Something like the ABBLs pales in comparison. Really. So the details and scope of the new objectives had me really excited. But then I started seeing those darn trees every time we read a new objective. I'd wonder, "Can he do that?" and then get a bit more discouraged every time I'd admit that no, I don't think he can.

But then I went home to the boys and set about doing the day's stuff. Our stuff yesterday involved running a series of errands, not your typical fun kid stuff but I try my best to at least make it interesting for them. I've been really trying very hard to give Oliver more and more freedom and running errands gives us a very natural way for him to exercise this independence. This is only possible because he is becoming MUCH less impulsive. And because his receptive language skills are slowly increasing. It used to be that any time we went anywhere I kept a tight hold of his hand. If I didn't then I could count on him running off somewhere, which is highly stress-provoking. I was terrified of him getting hit by a car or getting lost -- and for good reason because he really wasn't aware of his surroundings. I still don't think he is terribly aware but at least I can count on him not taking off at a run the moment his feet hit the pavement in a busy parking lot.

So yesterday we went from the Post Office, to the Ice Cream stand, to the plant nursery, to the grocery store and then back home. It took about ninety minutes and during that whole time Oliver completely managed himself. I only had to call him back to me a couple of times and each time he quickly returned to my side. And the whole time we were out I practiced our referencing activities and he responded beautifully. So when we were at the grocery store I merely got his attention and then looked in the direction we needed to go or the item we needed to get, etc. Now if only Sam were that easy. HE wants to argue over everything.

I am still on high alert every time we are away from home. It is as if every molecule of my body is ready to spring into action at any moment. But just the fact that I don't have to keep an iron grip on Oliver all the time is an indication of how much things have changed over the last six months. So slowly, slowly, I am learning to relax. And the more I relax the more I get to enjoy the view. The forest. And from where I'm sitting right now it looks pretty good.

Opting Out

A couple of weeks ago posts about IEPs started showing up on many of the blogs I read. It's that time of the year. It's stressful. It's anxiety-producing, and it's mandatory. I haven't written about our IEP meeting because we haven't yet had one. But we have been having lots of meetings and phone calls and discussions -- all leading up to the IEP. And all of it has made me a bit sad. A bit bitter. A bit less naive.

Here's the thing: we are lucky enough to live in a school district that really is trying to do the right thing. They are strong advocates of early intervention and have hired a company that specializes in ABA techniques to provide all pre-school children on the spectrum with in-home services. The program that this company has developed is truly wonderful -- not your typical desk-top, dtt program -- and it is staffed by the most caring people. The school district has also hired an Autism Coordinator to oversee the needs of all children with autism at all age levels. The Director of Special Education is caring and progressive. She and the Autism Coordinator recently went to a 2-day RDI workshop and are investigating how they might employ an RDI consultant to work with families and teachers.

Sounds pretty good, right? I know that many, many families don't have access to these kinds of services and I am thankful that I don't have to educate the people on our IEP team about Oliver's needs.

And yet.

And yet I am coming to understand that still -- despite all their good intentions -- they see Oliver as just another boy with autism. And since he has autism that means, according to them, that his education should be structured in a certain way. The real trouble started when I began questioning this rationale. This is when I discovered the myth of the IEP "team". Up until this point I had earnestly believed that we, the parents, were part of the "team". But now I see that this is only true if we go along with the rest of the players. Now we are the rogue players. We are the ones questioning the coach, the strategy and even the rules.

It started simply enough. After a year and a half I saw that Oliver still required a tremendous amount of physical prompting when it came to completing the visual schedule. This was irksome for me because I often thought that those working with Oliver, although well-meaning, prompted him too quickly. They didn't allow him time to process, to mentally disengage himself from whatever preceded. But beyond that, Oliver has never really had trouble with transitions in the rest of his life. We rarely find the need to use physical prompting with him. And with RDI I found that he would even gladly engage in an activity that might not be all that interesting to him. All I have to do is ask him to join me. And, to top it off, I don't believe that Oliver is necessarily a visual thinker. So why the visual schedule? Why keep pushing him to do something that is meant to help him compensate for difficulties that he doesn't really have? The answer? Oliver needs to be able to fit into a structured environment and to understand the nature of sequencing; that everything has a beginning, a middle and an end. He needs to transition at the proper pace and not in his own time. When he comes to need less prompting to complete a schedule they will begin to phase it out.

Can anyone say Circular Logic?

I could waste a lot of virtual ink explaining why I believe that teaching him to comply with an artificial schedule rather than helping him learn to take cues from the environment and to enjoy cooperating on a series of activities is a mistake. But rather I'll just say that this one conflict has helped me to understand a greater scheme of things. It has helped me understand how the specific needs of specific children get lost in the system. Even when that system is made up of caring individuals. That is just the nature of things. An Individual Educational Plan is still governed by what the school district believes to be appropriate practice. That's the system.

Not too long ago a woman with the school district repeatedly referred to Oliver as "low-functioning." After the third time in as many conversations I interrupted her and told her that I thought it was inappropriate. To this she responded: "Oh, we just use that as short-hand in reference to a child's communication skills." That's the system, too. They need labels and adjectives as identifiers. But in the end you have people who are making decisions about your child who are only really acquainted with the modifiers. So in our case you have: low-functioning, autistic child = visual schedule, physical prompting, heavy use of reinforcers.

And so we're opting out. I haven't worked out all the details yet. I don't know exactly how I'm going to make this work. But I won't be sending him to school in the Fall. I won't send him until he is ready and I can't say when that will be. But it feels pretty liberating to know that I won't have to compromise anymore about what I think is right. And it feels wonderful to know that we are free to use our own modifiers. And in our case that would be: eager to please, ready to learn Oliver = Homeschooling.