Bragging Rights

Like every mother, I like to brag about my children. I can find just about any reason to talk at length about how wonderful they are; How amazing and fun they are. Sammy started walking at nine months and one week of age! When he was 18 months old, Oliver could name all of his body parts in both English and German! My boys never cease to amaze me and I can't tell them often enough how proud they make me.

But sometimes I feel uneasy when I relate some achievement of Oliver's to my friends. Like when Oliver rode his tricycle after months and months of effort. Or when he actually engages his younger brother by looking him fully in the face for even just a minute. Or when he sings Twinkle, Twinkle, Little Star. Or, like last night when, upon request, he told his father "It's time to eat!" for the first time in over a year. These are the Golden moments of parenting a child with autism. Like any other mother, I want to share with the people in my life just how amazing I think Oliver is. But it is not lost on me how my golden moments might seem, well, pathetic to some. I can only imagine how I might respond to similar tales if both of my children were neuro-typical and I had no other frame of reference. I imagine that it is hard for people to understand how much work goes into any small achievement for our children with autism. And parents of children with autism know what goes into supporting our children so that they can achieve. The logistics. The scheduling. The finances. The emotional strain. The love. The fear. But all of this is within the context of hope. We hope the very best for our children and so would do no less than everything in our power. Every accomplishment then, no matter how small, nourishes the closely-held flame of hope that we carry with us as we make our way day-in and day-out.

Other than this blog, I don't share our challenges and triumphs with many. The line between pity and piety is not one that I wish to walk and so I mostly share the dirt and the gold of raising a child with autism with the many, wonderful autism professionals in our life. I have often considered what an isolating factor autism has been in our lives, which is especially ironic given the root of the word.

These are the thoughts I had after viewing the 13-minute documentary Autism Every Day and then reading many of the commentaries that have been written about it, mostly critical in nature. This is a film that shows all of the dirt but none of the gold. Is that wrong? Well maybe. But it is a start. Perhaps it will help people to understand why Oliver sits on the sidewalk in front of our house shrieking when he can't go for a car ride. Perhaps it will help people understand why it is cause for celebration when he doesn't. And so while I am disappointed in things about the documentary I am interested in seeing where it will take us. There is another tale to be told. Let's hope that the next 13 minutes of film devoted to autism shines like gold.

All Autism All The Time

I've been scarce lately. The usual demands of family and household coupled with the extra lovely weather have kept me from taking up my usual end-of-the-day-too-tired-to-do-anything-else post in front of the computer.

Also, I am trying to take a break from autism. Because around my house -- or at least around my head -- it is all autism all the time. Since Oliver's diagnosis on August 4, 2005, I have barely thought of anything else. So now I'm practicing taking time off. And by that I don't mean that I'm taking time off from Oliver, but just from the autism. I want to regain some of what I lost when the word autism came to rest with us. I want to remember what it was like to look at Oliver as a whole little boy and not a list of behaviors and characteristics. He deserves that. And so do I.

Last Thursday we took Oliver to a medical center in a nearby city so that he could be evaluated by a developmental pediatrician. I had been putting it off because we already had two evaluations, one through the school district and another through a local university. But a friend, who is a neuropsychologist, urged me to take him to see a specialist so that we could rule out any other conditions that might present autism-like characteristics. I didn't believe that to be the case but figured that we might as well check the box anyway. In some ways I wish we hadn't.

But I'm also glad that I waited until this point in our journey to check the box because I felt empowered by having 8 months of experience and knowledge under my belt. I didn't doubt for one second that I was the expert in the room when it came to Oliver. It also became clear to me how one-dimensional these assessments are and I made up my mind on the drive home that I will never have him evaluated or assessed in this way again. What is the point? Why should I keep measuring him when I see before me a child who loves, laughs, and is full of potential?

I asked the specialist at the end of the evaluation about her practice. She follows more than 2,000 children in our state. She sees an average of 20 new children each week. She was very kind and wonderful with Oliver but I left feeling as though I contributed to the statistics she will use in her next paper but that we got very little out of it. She said she wants to see us again in six months but I doubt we will keep the appointment.

Oliver did pee on the potty in the public rest room though. He'd never done that before so we were thrilled. And at the end of the three-plus hours in a small room with 5 adults he started hitting himself in the head with the mega-blocks. He'd never done that before, either, and we weren't so thrilled. Actually, after three-plus hours, he wasn't the only one who felt like hitting himself in the head.

Autism rules my life at the moment, and probably will for a long time to come. And that's OK, I guess, because even though I came to motherhood slowly, I'm still the mom after all. But the trick, and the test, is not letting it rule Oliver's life.

And If I do, just hit me in the head with a mega-block, OK?

The Home Team

We have had a very different experience with our school district than many other parents of children with autism. The director of special education has been a great advocate, right from the start, of making sure that Oliver gets what he needs. She really believes in early intervention and she really believes in the IEP process. And, more importantly, she listens to what I have to say about Oliver and what the autism professionals have to say about the needs of autistic kids. The school district has engaged the services of a regional service provider to work with the kids in our area. Oliver was the first child to receive these services, starting late last September. Now, I've heard, there are 6 or 7 others, all of whom were diagnosed after Oliver.

Initially, Oliver was enrolled in the peer-model pre-school three mornings a week and was assigned an aide. He was also given 15 hours of in-home therapy. Later, at my request, that was increased to 21 hours, totalling 30 hours of programming altogether. And we've been cruising along like this, fairly happy, since September.

But then the director of special ed. approached the autism coordinator and asked her to assess the programming. And Mary, the shining, wonderful, star that she is, told her that it was OK. But that it could be better.

It could be better?

Yes. It would be better if Oliver didn't have to go to the pre-school where he has to fit into whatever they have planned whether it is appropriate for him or not. There are too many lost teaching opportunities each day, she told the director. And it would be better if Oliver had social times that were engineered specifically for him rather than seizing whatever opportunities happened to come up throughout the day.

OK she said. Whatever Oliver and these other children need. Let's do it.

So, one by one, each of the children in our district with autism have been pulled out of the classroom by their parents. More of their needs are being met on an individual level in the home environment. And special arrangements are being made for each child to get appropriate socialization experiences within the community. The school district is working on building relationships with the local children's museum, the library, the community recreation center and local community pre-schools.

Last week Oliver said good-bye to his teacher and his classroom. I suspect that he wasn't bothered by it a bit, although I do think that he will miss his 5 minute bus commute each morning. Martha and Lindsey, his classroom aides, have instead greeted him at our front door each morning this week and he has responded with a wry smile and a look in his eyes that clearly said: "What are you doing here?" And a quick review of his data sheets at the end of two days showed that he had two of his best days ever.

When I got home yesterday Oliver was sitting on the couch with Lindsey singing Twinkle, Twinkle Little Star, each word clear as a bell. And later last evening I took him with me to the supermarket to get some ice cream and there he was, standing up in our cart at the register belting out the words to the song, in his outside voice no less, and strangers turned around to look at him and smile. You couldn't have measured my happiness.

Could things be even better? Probably. As Mary tells me: Oliver is always growing and changing and so are his needs. But it sure is nice to know that we have the right people on our team along the way.

That's My Story and I'm Sticking To It!

I had the occassion recently to re-read some of the paperwork from Oliver's initial evaluations and I was reminded of how difficult I found it to answer some of the questions that had been posed to me about Oliver's behavior. For example, I was frequently asked, "Does he line objects up?" and "Does he like to spin?" Well, the answer to both of those questions was "Yes" but I always qualified my answer by saying that I didn't feel he was doing so inappropriately. Still, when we got the reports, each evaluator wrote that Oliver liked to line things up and spin. So that has always bugged me. Also, the idea that Oliver "lacks imaginative play" has also bugged me because let's face it: we don't know what is going on inside his head and who's to say that it isn't imaginative.

Anyway, here are some pictures of Oliver at play. The little people wait in a line for the bus, then they all get on the bus until there is just one left. The one little girl is always the last to get on, there are no seats left on the bus, and Oliver spends a good bit of time regarding her, engaging her with Oliver-speak. Is he convincing her to get on the bus anyway? Is she lost? Is she afraid? Is she just non-compliant? But after awhile she too, gets on board. The bus then drives back and forth across the table a dozen times afterwhich everyone disembarks and gets ready for another ride. So that's me, his loving mother, describing Oliver's play activities.

And here are the pictures:

The Bathtub Blues

The patter of little feet roused me again last night at 12:30. I had been sleeping deeply enough that I guessed we were much closer to morning than we were. So I was a bit startled to see the time after lurching down the hall the bathroom where I collected a benedryl tablet and a glass of water to help with Oliver's stuffy nose. He was asleep moments later and I carefully repositioned myself between my two boys only to have Sam make himself even more comfy by propping his feet on my chin. No matter, I was tired and fell back into a deep sleep.

4:30 am, I was awakened again by the sound of Oliver's voice crying out: "I want in the bathtub!" over and over again. I did my best to calm him by holding my hands over his ears and singing softly to him but as soon as his sobs subsided it was as if he remembered again what had upset him and he began crying anew. Sammy slept through the whole thing until Oliver's cries built to loud, startling shrieks, at which point I had two crying babes, one on each side of me. Eventually, Nik got up with Sam and I stayed in bed with Oliver where he finally managed to drift off into sleep, and where he happily remained when I left home at 7:45.

There are three phrases that Oliver uses to tell us that something is just not right with him; that something is causing him enough anxiety that he wakes up sobbing in the middle of the night, unable to be calmed. "I want in the bathtub," "I want T.V.," and "I want in the car." The first two are activities that have, in the past, been difficult for Oliver to transition from. The end of bathtime, in particular, used to be the cause of almost nightly tantrums. The last activity: car rides, have lately served to soothe Oliver when he has trouble focusing. When I absolutely can't think of another thing to do I load the kids in the car and drive somewhere. But when Oliver wakes up in the middle of the night sobbing that he wants in the bathtub I have to wonder if it isn't a symptom of some larger frustration; of him wanting something but feeling utterly unable to obtain it.

I took one last look at Oliver's handsome face resting on my pillow before I left for work this morning. I wondered how he would be when his father woke him and got him dressed for the day. I wondered how he would greet Martha, his in-home ABA therapist, when she arrived at 8:30. I wondered how he would respond to the demands I knew she would put on him throughout the morning. Since I left my full-time job in January my work day lasts just three and a half hours, but wondering how Oliver is doing after such a hard night makes those hours seem a lot longer. I anxiously look at the clock about a dozen times and find an excuse to leave fifteen minutes early.

On the drive home I tried to pinpoint anything that might have triggered the upset and came up short. Was it because I had been ill-tempered the day before? Was it because Martha showed up at the house instead of Lindsey that morning? Or was it nothing in particular?

The rest of the day went fine. Oliver's morning ABA session went well, although he was unusually sedate. He happily visited with his "Gram" when she came to watch him for an hour. He showered her with hugs and kisses and did not melt-down when she left. He requested riding on the swing and climbing the ladder in the back yard, rode his bike around the block and ate a dinner of salmon cakes, green beans and pineapple without prompting or help.

Little by little I see that Oliver is growing and maturing in ways that remind me of all his potential. There are set-backs along the way, nights that harken back to the bad ole days of no sleep at all -- when almost EVERY night was punctuated by Oliver screaming for the bathtub -- but two bad nights in a month isn't much to complain about. And maybe it even means that he is mostly getting what he needs; that we are all learning and growing together in the right direction. And maybe nights like that are even helpful, somewhat, because it reminds me to refocus on the big picture (which is suprisingly easy to lose sight of): Who cares if he picks his nose? Who cares if he runs around the perimeter of the room a million times before bed? Who cares if he doesn't play appropriately with his toys? The most important thing is that we find a way to give him the tools he needs so that he won't have to feel so frustrated all the time. And that little lesson, I suppose, is worth losing a night of sleep over every now and then.