Jumping off the Fence

I don't know. Your child has a bad reaction to a vaccination and then, you know, gets diagnosed with Autism and you tend to be a bit skittish about vaccinating after that. On the one hand, I don't think vaccines caused Oliver's autism, but I often wonder if maybe it exacerbated things. The illness that followed his 18 month vaccinations was just so dramatic and his decline afterwards so rapid that it is hard not to feel there was some link between the two. And even if it was a coincidence, I won't ever feel bad for my caution with Sami.

Anyway, I finally decided that it was time to get off the fence and start immunizing Sami. He is nearly three and a half and is becoming less and less sheltered and therefore more exposed to people and the germs they carry. And in the Fall I will send him to pre-school three mornings a week and they require him to be up-to-date with all his shots. I know my pediatrician has given medical waivers to the siblings of other kids with autism in his practice but I don't feel completely right about going that route. Because, like I said, I'm pretty sure Oliver was born with autism and Sami was not.

So I called the pediatrician's office and found out that he will need five shots altogether. Since I waited so long he actually needs cumulatively fewer shots than he would have if I'd gone according to schedule. But then I've also decided not to vaccinate for Hep. A and so that means he will actually have to get an extra shot. When I asked the nurse if I could tell her when we got there which vaccine we wanted on that day she said: "You mean you're going to have them all done separately? That's going to take a long time!" I considered this kind of funny because um, I'd already waited three and a half years! Also, what? Did she seriously think I was going to wait all this time and then go in there and surrender my kid up for a series of six shots?

I'm feeling pretty good since I made the decision. At least I won't have to worry every time he gets a fever that it is something seriously contagious that I could have prevented. And in case anyone else who reads this struggles with the whole issue, I just wanted to recommend The Vaccine Book by Robert W. Sears. It is a very balanced and detailed look at the diseases that we inoculate against, prevalence rates and risks should you contract the disease, how different manufacturers produce the vaccines, the potential risks of each variety, travel considerations and options to consider when getting each vaccine.

The Rhythm of Movement

I'm slowly -- SLOWLY -- making my way through all of the Enki materials that came with our kindergarten package. I love the philosophical underpinnings -- they so closely mirror what we are doing with RDI. I hope to post more on that in the future but I'm not anywhere near knowledgeable enough yet to do so now. But one element of the Enki approach that really appeals to me is the idea of using song and rhythm as a guide to movement throughout the day. We've been kind of, sort of, doing this for a few months now and I find that the use of song, chanting, and rhythm has really made a big difference as we move from activity to activity. No more nagging, no more pushing and prodding, no more wrestling kids into clothes or teeth brushing.

As I start thinking that it is time to go and get dressed for the day I just start singing the Start of Day Song. It's just a simple song that we made up with very unimpressive lyrics all rhyming with Day -- but the idea is that when I first start humming the song and then singing, the kids are mentally and emotionally preparing themselves for that transition. Then I move into the kids room and sit in front of the closet, they join me, gradually pick out their clothes and get dressed. Depending on what side of the bed they got out of, I may need to help one of them a bit more than usual, but in general I've been surprised with how really well it is working and how little prompting I end up doing. I also have a teeth-brushing song, an eating song and a rest time song. Sometimes I give both of the kids a drum and they play and march along as I sing.

I'm not sure why it works, but for us, for right now, it really does. Somehow it gives us a unity of action. It isn't mom saying: OK, time to brush your teeth! It isn't directive at all. It is just a rhythm, a movement that is necessary but also reassuring and enjoyable. I also really like it because the transition from one activity to another then becomes an activity: we're singing, we're dancing, we're clapping, we're drumming. I feel less like I'm herding and more like I'm creating moments of warmth and growth.

Now that we've been working for a few months to get our daily rhythm going, I'm anxious to see how I'll be able to work in the other elements of the curriculum. One very reassuring thing is that for kindergarten the emphasis is very much focused on experiential learning through play and not on academics. I feel like we've got a couple of years of grace before I start to focus on anything more than what I would already be teaching him through RDI. It is also so nice that both Enki and RDI remind me to be mindful of what is developmentally appropriate for Oliver and not to try and rush him into some age-based model of learning that would surely make both of us hate the whole process.

Anything you want, my dear.

Making choices has always been hard for my boy. I'm not sure I understand why, but if you hold two items up in front of him and ask him to choose which he wants, there is no thought behind it, no real agency, he merely grabs one to please. I think this has a lot to do with why the whole Yes/No thing is so hard for Oliver. If you ask him a question like: Do you want this? He will normally answer yes. Not because he wants the item but because usually a yes answer works.

This morning, however, I served Oliver up some of my favorite baked oatmeal for breakfast. Normally this is a winner with my boys -- think warm oatmeal cookies with milk!! But this morning Oliver just picked at the food. From my spot at the counter where I was making bread I kept reminding Oliver that he needed to eat before we could do anything else. After about the 10th time of urging him to eat, Oliver stood up, picked up his bowl in both hands, held it out to me and said: "I don't want this!!"

"Oh, um. Ok. What do you want?" I asked him.

"Waffles."

"Waffles?"

"Waffles. Yes!"

So waffles it was.

On the one hand, I was thrilled. Talk about communication! But when it happened again at lunch I started to wonder if maybe communication is over-rated :-)

Not that I'm complaining or anything.

Being in the world

I have so many things to be thankful for. Really, I do. And so it is surprising that I sometimes get caught up in negative thinking. But I do that too. Yet today I had reason to reflect on how far we have come in just a short, short period. What got me in this frame of mind? The Salvation Army, the pharmacy, the post office and the fabric store. You see, it wasn't too long ago that I dreaded -- dreaded -- running errands with my boys. I was often frantic and overly concerned with what other people thought. I was hyper aware of the "need" to control Oliver's behavior. And we experienced our fair share of public meltdowns. Can you say "anxiety"? Because all of those things together is a sure recipe for anxiety. And let's not forget that there was a period of time when I wouldn't even have considered taking my kids on all those errands, let alone in one morning. But today, that's just what we did. And do you know what? My kids were super stars. The difference, I think, is that I have learned to slow my pace, relax a bit about both what I expect of my kids and about how much I care about what other people think, and to recognize that all of this is part of an important process. It really is about the journey, not the destination. So when we got to the fabric store and both kids wanted to roam the isles feeling all the fabrics and whatnots -- I let them do just that. It didn't really matter that I never got to look for just the right shade of orange trim for my curtains or that they both tried to make a nest out of a pile of remnants and the sales lady was giving us the evil eye. What mattered was that we stayed together, we laughed, we explored and we all left there feeling pretty good.

Being out in the world feels pretty good. Watching both my boys learn to navigate all kinds of people and places just feels right. There was a time not long ago when Oliver absolutely could not tolerate the purchasing transaction. If we selected something to buy and carried it around with us, well, he was not happy to give it up and see it disappear into a bag. But yesterday at the bakery my boy actually pointed -- pointed!! -- to the cookie he wanted, handed the lady the cash, took the change and then greedily ate both his cookie and mine. Did he understand the fine points of the transaction, like how much the cookies cost and how much change he got back? Probably not. But I'm fairly confident that he knows what money is and that you need to pay for things and well, it's a start. One that we wouldn't have if we weren't out there in the world, unafraid to live our lives.

Of course, we still have our moments -- like yesterday when Oliver made a grab for the stunned biker dude's bottled water. He nearly had the cap off before I got to him. But in the scheme of things those moments are so small really. And anyway, the look on that biker dudes face made it totally worth it.

If a letter never gets read does it really make a point?

For those of you tracking such things, summer vacation is nearly one-third over. I'm keenly aware of the passage of time this summer; I want to have all my ducks in a row to start our homeschooling adventure in the fall and that means lots of reading and internalizing. I also have one order of business to take care of that will formally take us out of the public school system. I'm required to notify the school district of our plans to homeschool. I'm sure nobody really looks at the letter. It probably just gets filed away somewhere and that is that. I'm just not sure how I feel about going so quietly. I want my voice to be heard. I came to the decision to homeschool out of necessity. Nothing the school could or would offer me is satisfactory and I want them to hear that. I want to tell them my thoughts about this experience when I visited the kindergarten classroom where they would have me place Oliver. I want to tell them how it feels to have an SLP who has no understanding of autism working with my son. I want to tell them what I think of a school district that won't support a family systems model of remediation and yet commonly places middle-school aged children like my son in residential facilities.

And yet. ...

I have a good friend here in town who fights the good fight. She knows the law. She has educated herself on how to be a good advocate. If you look under mama bear in the dictionary you'll find her picture. But I also know how emotionally draining it is for her. And in the end, even if she gets everything her heart desires for her son, who is so much like my Oliver -- it wouldn't be anything I'm willing to fight over. An old tin can is still an old tin can, even if you knock all of the dents out of it and put a new label on it.

I won't be happy with anything less than a paradigm shift. And one little letter from me telling the school district how I feel won't even take me a step closer. I've been mulling the idea of writing two letters, one formal, perfunctory letter telling them that we will be homeschooling and another -- sent directly to the superintendent and special ed director -- telling them, well, everything else. But wouldn't it just be wasted energy?

What do think?

The Art of Listening

I watched Autism: The Musical a few months ago and have thought about it off and on since. There is a scene where the young man who is mostly non-verbal starts to communicate using an assistive technology device. The first thing he says to his mom is: "You need to listen more." It was such a powerful moment. As the mom a mostly non-verbal child, I can tell you that I spend a great deal of time trying to understand my son. I watch him like a hawk. I interpret, analyze, infer. And I try to listen with my heart when I remember. But if he could talk would he tell me the same thing? How good am I at listening? I don't know. I really don't know. But I've been thinking about it a lot.

I'm All Ears

I'm all ears. That's what I would have said if I hadn't been so astonished when you demanded my attention from your spot in the backseat with a loud "Mom!!" -- double exclamation points and all. "Turn on the music!" you told me when I swiveled 'round in my chair in time to catch the gleam in your eye.

So I did.

And yes, let there be music.

Adventures on a Thursday

I never go to the mall. I HATE malls. But RT, being a teenager in a somewhat small town, has been asking to go there to hang out with his friends. Today we agreed that he would take the bus there and that I would pick him up around 6pm. Later, I came home from an outing at the park to find a message from Nik saying that he had to work late and wouldn't be home until sometime after six. So what did I do? I came up with the idea of going to the MALL to have dinner with the kids. You know, one of those chain restaurants where everything kind of tastes the same. My reasoning was this: 1) I did not feel like cooking anything for dinner, especially if it was just going to be the three of us and 2) I want Oliver and Sami to get used to eating in restaurants. We hardly ever eat out -- maybe only three or four times a year; and 3) last time we picked RT up at the mall, both kids were very interested in this particular restaurant and it's colorful chandeliers. So off we went.

Oliver was so excited to be sitting in our bouncy green booth with the fancy chandelier that he could barely sit still. I ordered both the kids a juice box and a lemonade for myself and you would have thought they had never had a drink of anything in their life. In fact, Oliver often insisted on drinking from his juice box and my lemonade at the same time. And did I mention how excited he was? He kept letting out these loud sort of whooping noises. I don't think anything of them anymore but we did get some kind of nervous looks from some of the wait staff. But I really don't care. Especially now that we will never be going back there again.

Shortly after we ordered our food Sami announced that he had to go to the bathroom. He is enthralled with public bathrooms so I regarded him a bit skeptically but gathered them both up and herded them towards the women's room. Sami spent some time using the potty and I hurried him along thinking that I didn't want to spend the entire time in the toilet. When we got back to the table both kids were so excited that they barely ate anything. Oliver kept trying to stand up and swing the chandelier back and forth and Sami just wanted to talk about the decorations on the wall. My food tasted like cardboard. It was about this time that I started to regret the whole adventure.

Then Sami told me that he had to go to the potty again and I told him that we were almost finished and he would have to wait. Huge, fatal mistake. A minute later he got kind of an astonished look on his face and he told me that he had poop in his pants. I got up to get a better look and saw that there was, in fact, poop -- everywhere. I started grabbing napkins from all the nearby tables but it barely helped. The waitress brought me some towels but what we really needed was a hose. Oliver took advantage of my distraction to start banging wildly on the chandelier and in the process accidentally knocked over my lemonade. I cleaned up and bagged up as much as I could, threw some money down and made a bee line for the door.

Lest you think it was all bad, though, a couple of good things:

1. I'm ready to try again. Different restaurant though.
2. Oliver loves going places and trying new things. He was so full of joy, sitting there in that booth.
3. Sami was a real sport through it all.
4. I was actually able to laugh and see the humor in it.
5. I am now re-thinking that cow-share that I was going to buy since I'm pretty sure it was all that yummy milk that threw his system out of whack.

For Gretchen and Kyra

OK, you Asked for it!!

Granola
The cast of characters:

4 cups rolled oats
1/2 cup nuts (I used almonds)
1/4 cup sunflowers (I used roasted, no salt)
1/2 cup whole millet or buckwheat groats
1 cup whole wheat flour (or corn meal or other whole grain flower)
1/4 cup wheat germ
1/4 cup flax meal
1/2 cup coconut
I added about 1/3 cup brown sugar, although you could skip it if you like it less sweet.
cinnamon to taste
Mix

1 teaspoon salt
1/2 cup honey (could substitute maple syrup)
1 cup water
1 teaspoon vanilla
Heat this and then mix with dry ingredients. Spread on lightly oiled cookie sheet and bake for one hour on 250. Turn with a spatula everytime you think of it.

And, Voila:

I actually adapted this from another recipe and I didn't really measure anything. I'm more of a handful and pinch kind of gal, but I think the above is pretty close. I tried throwing some dried fruit in tonight for our before bed snack and each of the kids ate three bowls! Oh, and my neighbor gave me some fresh-from-the-cow milk tonight so we poured that on. Mmmm. Makes me feel like a regular pioneer woman!




ps: I'm really into finding the perfect granola recipe right now so if you think you've got a better one, I'd love to get a copy.

Another post about sleep. ...

Did I tell you that Oliver is not sleeping again? I'm not sure when it happened exactly but it has been more than three weeks. Not every night, of course. Once in awhile we get a break. But Man!! this no sleeping thing is hard. I'm not working a regular job anymore so theoretically that should make it easier. But I'm doing all the planning and prep work for my certification program at night after the kids go to sleep -- so basically I park myself at the computer around 9pm and don't move until midnight or later. Sometimes much later. But I'm trying to maintain a good outlook about it. It helps that the RDI approach to things means that I'm already keeping things slow and steady. If I'm tired, if Oliver is tired, then we can spend the morning in our pjs playing silly face games together on the couch and I don't feel guilty. (Yes, if he is awake I am awake -- he's just a little boy! I never get those people who tell me to let him cope in the night alone.) And yet, I do see such a difference in my boy and his ability to focus and cope when he isn't sleeping well. I just SO wish I knew what to do to help him -- us -- to get through these periods. Right now we are piggy-backing melatonin and benedryl, which is the only recommendation I got from the pediatrician, but it just seems like there should be a better solution. And sometimes even this doesn't work. I googled sleep clinics and found that there is one fairly close to where we live, but upon reading more I discovered that Oliver would need to go to sleep wearing sensors on his scalp and face and elastic bands around his chest. For a boy who can't even tolerate a band-aid, I can't even think about how a scenario like this would work. Still, I think I will call and see if there is an alternate method.

So I haven't been blogging much. I'm tired a lot these days. And when I'm at the computer it usually involves working. But some good things have been happening:

1. Date nights. Nik and I recently discovered that -- hey! we have a very capable teenager living with us. So one night a week we put the kids in bed and when they are asleep we wave good-bye to the teenager and wish him luck. The first night we went out for a glass of wine at a nearby jazz bar that I had been wanting to visit. The second night we went to an incredibly awesome wedding and Nik and I danced until we dropped. (Klezmer music, which is funny because Nik can only swing dance and I can only salsa -- but we made it work :-) This week we just went for a long walk around town like we did in the old days before children.

2. Granola. You love it, right? Who doesn't! After much trial and error I think I've finally found the perfect granola recipe with the right combination of sweetness and crunchiness: rolled oats, raw wheat germ, flax meal, corn meal, almonds, sunflower seeds, coconut, buckwheat groats, brown sugar, salt, honey, cinnamon, vanilla and water. All the fine parts glue-up the coarse parts and the result is better than yummy! I've got some in the oven now and my bowl of milk is standing at the ready even though it is 11:47 at night. There is never a wrong time to eat granola.

3. I am loving the work that goes along with my certification program. It is hard, I'll tell you that. But I'm learning a ton and the work, the education, well, it is all so motivating and rewarding. And that is a good thing because the more I learn the more I see that I have to learn!!

4. Oh, and one more month until we leave for vacation and I've already got lists everywhere! I'm really good at making lists but bad at checking things off until the very last minute.

OK, the granola is ready, it's after midnight and I've got to go find a spoon. Sweet dreams everyone!

Ready, Set, Go!!

All those years of accumulated frequent flyer miles have finally paid off: we're going on vacation!!! We had been watching the transatlantic fares for months, hoping they would come down low enough to make the trip to visit Nik's family in Switzerland. We're a family of five now so the difference of a few hundred dollars per ticket is a big deal. But imagine my glee when I discovered that for the cost of one ticket we could purchase enough miles for all five of us to travel! The only downside is that on the return trip, Nik and RT will depart a day early since those were the only seats available. That means that I will be flying alone with both kids, transferring once in Munich. I'm a bit apprehensive, but the thought of 26 days of real vacation makes me think I can handle anything! It has been two years since we visited last. Too long.

Nik's mom is the most wonderful hostess. She is the kind of person who always has a smile on her face and laughter at the ready. And all of Nik's four other siblings live within a stone's throw of the old farm house where he grew up and where his mother still lives. Also, Nik's sister has Down Syndrome and his mother worked in a home for people with autism as a cook for years and years -- so they all understand what it is like to live with, and love, a person with differences. This means that I'm not constantly worried about Oliver's behavior while I'm there. They just really and truly get it. The time I spend there is always so precious.

Five weeks until lift-off!!

The Longest 9 and a half minutes

At the end of our ten minute saga, Oliver came trotting barefoot down the main isle at Target, trailed by two red-shirted employees with amused looks on their faces.

But before that moment, there were the 9.5 moments when I didn't know where Oliver was. There was the ONE SECOND when I looked from the boy next to me to the rack of shoes that I scanned for his size. When I looked back, he was gone. I raced to the end of the isle. I sprinted up and down the rest of the isles of the shoe department calling his name in what I hoped was not an hysterical voice. Then I sprinted back, grabbed Sami and raced for the customer service department where I promptly burst into tears. "Please, help me find my son!" Then, in a rush of words I described Oliver and told them that he had autism and that he can't talk and that he wouldn't respond if they called his name."

I think back to those moments and wonder why I was so extremely upset. Obviously, Oliver had run away. I say this because he's been doing this lately when we go to stores -- especially to Target. I'm aware enough to know that it is his burgeoning desire for independence working against my extremely tight control over him. I give Sami far more freedom than Oliver and I know it is wrong but then again, impulse control is not something that I worry about with Sami. But here we were at Target. I was reasonably sure that he wasn't going to be carried off somewhere, that he wouldn't get hurt and that he would be returned to me. But there are lots of places we could be where I wouldn't be so sure of those same things and so I always keep an eagle eye on him. It is my worst fear.

So Oliver had his little adventure. I learned a valuable lesson. And it all turned out OK. I'm pretty sure this won't be the last time for something like this. I just hope it doesn't happen again any time soon. I don't think my nerves could handle it.