Halloween!

For the third year in a row we had picture perfect weather for Halloween. What a drag it is when the weather actually acts like late October and requires the kids to negotiate their costumes and a coat! But tonight was not a night like that and what fun it was to navigate the sidewalks on our street among all the costumed kids. Sami and Oliver were literally bouncing from house to house and at each door Oliver either said: "Trick or Treat"; "Knock Knock"; or "Turn it off!" (this last, I think, because of his desire to pull a phrase from his memory beginning with the T sound :-) The kids were so excited about Halloween this year that we ended up stopping at far more houses than we ever have managed before. In fact, I was marvelling to myself how different this year was from my last vivid memory of the halloween that came soon after Oliver's diagnosis. I was sure then that we would never enjoy halloween together as a family in the same way that I had enjoyed it as a kid. Tonight I felt much differently. Oliver tolerated a costume this year and even seemed to enjoy it!! That is definitely a first.

After trick or treating, we handed out candy for awhile then made our way to a community party -- think bonfires, pinatas, pumpkin carving and hot chicken soup for all! The best part though was the music. As soon as we arrived, Oliver stationed himself in front of the musicians with rapt attention and huge smiles. I wish I had gotten a picture.

Here are some of the pictures I DID manage to take!

Sami, examining his loot!

Oliver, pretending that he is just checking out the nose on this guy before he gets down to business blowing out the candle!
Oliver, all costumed up and ready to go!!

We've been carving pumpkins here for more than a week. Every few nights we'd try a new one. Lots of scary stories were told on these steps in the evenings as we huddled under blankets and watched the candles flicker.

Happy Halloween, everyone!!

Any belief that I am in control is pure conceit

Have you ever had a conversation with a friend or professional in which you discuss how you "discipline"? I've just thought about this again while filling out the questionnaire given to us by the speech pathologist I mentioned in my last post. You see, the fact is, we've never found a method of "disciplining" that works with Oliver. Time outs? They don't work. First, he doesn't seem to mind sitting in a quiet place for any length of time. And the minute we tell him he is free from this "thinking space" he goes directly back to doing whatever landed him there to begin with. Spanking? Well, I don't believe in it for starters and both times when we did spank Oliver, he laughed all the way through it, making us even angrier, which is not a fun place to be. We spoke sternly. We yelled. We had do-overs. None of it has worked. I remember buying Dr. Sears' Discipline Book and reading it from cover to cover before angrily throwing it across the room because nowhere between those covers did he suggest anything that I even thought might work. Sometimes I believed that Oliver just didn't make the consequences connection. And that may be partly true sometimes but I don't think that gives Oliver enough credit. Mostly I think it is rather a matter of desire. Oliver is just willing to put up with the consequences, no matter what they are (which is one reason why ABA never worked so well for us), so that he can do those things that have captured his interest -- whatever they may be. Usually this involves making some kind of outrageous mess or destroying something that belongs to someone else.

Lately we are battling over:
* the excitement that is Vaseline spread over every available surface.
* eating the pool noodles that belong in my RDA kit
* spraying Simple Green or Windex all over the place. (Yesterday I lost two fresh from the oven loaves of bread!)
* dumping the box of legos
* eating vitamins by the handful

Over the years I have wavered between the desire to hide all attractive items from view and insisting that we leave them where they belong so that Oliver can learn about decision making. The first option saves me lots of hassles but it just doesn't feel right. Especially now that Oliver is getting older. Still, when I climbed the stairs today to find Vaseline covering the windows, desk, computer, chair, carpet and boy. ... well, I only blamed myself for not putting it away after using it. The stuff is just too tempting for my sensory seeking guy. (and anyone with ideas about how to get vaseline out of my upholstered chair, please let me know.)

All of this leaves me feeling like I have to constantly shadow the boy around the house. My only alternatives are to 1) require him to stay where I am, 2) move with him from room to room, or 3) accept that I will ultimately have some sort of mess to clean up if I don't do #1 or #2. Normally, I use a combination of the three throughout the day. But it is no way to live -- not for either of us.

I remember last year when we spent so much time potty training. I tried everything until I finally hit upon the winning strategy: leaving it up to Oliver. I made it very clear to Oliver that he had a choice in the matter but that it was up to him. I turned the control over to him and that was all it took. Within a few days Oliver was potty trained and we never looked back. So I'm adopting this same strategy with all the items on my list above. I'm not moving them and I'm not making a big deal about it when he makes the wrong choice, except that he has to help clean up whatever mess he makes. When I see him reaching for the Simple Green I simply remind him that he has a choice to make. While I'm standing there he always makes the right choice and I thank him, but as soon as my back is turned he pretty much does what he wants. I make him help me clean up and tell him that I am disappointed about his choice. In between I give him lots of "good" sensory options to fill those needs.

I don't know if this "strategy" is going to work or not. It is heavily reliant on Oliver's grasp of what I am trying to communicate with him. But I remember when we were at the height of the potty training saga and I found myself just totally resigned to the fact that ultimately it was his choice and that I could only support him through the process so much. That's the way I feel now. Resigned and accepting that with Oliver anyway, learning is not going to be so much about consequences (if you do this then X thing will be done to you -- what most people think of as discipline) as it is about making choices and learning to have the discipline to control his own behavior. Sure, I'm emphasizing the consequences of poor choices, but my disappointment, or pride, or gratitude are so much less tangible than being sent off to a "thinking space."

Some stuff in no particular order

1. Our car is no longer with us. I barely managed to make it to the shoulder of the interstate before she died and then I sat there wondering what in the heck I was supposed to do. Hang a white flag out the window? Or is it red? Either way, we had nothing suitable. We did, however, have a fresh stash of apples, which came in handy. Nik was out of town and I don't carry a cell phone. So I popped the hood and tried to look as perplexed and frazzled as I could at all the smoke coming from the engine (which wasn't hard, let me tell you). Then I climbed back into the car and waited. Mercifully someone called us in for emergency assistance. State Trooper arrived, tow-truck was called, and the kids loved every minute of the whole two and a half hour ordeal, especially riding in the tow-truck.

2. Car shopping sucks. We haven't found one yet and rather than rushing into a decision we are going to try and go car-less for a few weeks. This means I'll be riding both kids on my bike. Sami rides in this. Oliver rides with this. I've never managed both kids at once. I may be begging for a car by the end of the week.

3. I think I found an SLP who might actually have a clue. We met with her on Tuesday and I loved her instantly because she set both Oliver and myself at ease and asked all the right questions. I don't love the cost, which we can't afford. Our insurance doesn't cover speech therapy unless it is deemed medically necessary. Makes me want to scream.

4. The State of Virginia, where I live, is considering legislation that would require insurance companies to cover the cost of certain therapies for people with autism, including speech and OT. This could pass early next year so we may be in luck.

5. I wish I knew what it was about our local pool that frightens Oliver so. Last year he couldn't even go inside the pool area after they enclosed it with a bubble for the winter season. This year we've actually been swimming a few times but he clings to me so tightly and I feel his little heart just pounding away. Last weekend he managed to swim a few feet between Nik and I about six times but then he was done and asked to go home. And yet, every day I ask him if he wants to go swimming and every day he says yes -- so even though he appears terrified of the actual pool, I am super, duper, impressed with his willingness to work through whatever is going on with him. I suppose it is partly because he loves swimming so much.

6. Oliver is back on track with the sleeping since last Thursday night. What a relief! I'm thinking of investing in a weighted blanket. I'd love to hear from people who found this to be helpful with sleep issues.

The Worst

Last night was the worst night in, well, ever. Nik is out of town and I was still up working on a deadline for my certification program at 12:20 when I heard small whoops and giggling coming from Oliver's room. I called to him a few times to go back to sleep, somehow thinking this might work. It didn't. By 12:40 I moved him into my room, gave him two benedryl tablets, shut down the computer and climbed into bed with him. Around 1:00 I heard his tummy rumbling so we moved into the kitchen where I made him a quick bowl of oatmeal. 3am, another dose of melatonin. 5:20, another dose of benedryl. 6am, sleep. 7am, Sami awakens, I beg him to go back to sleep. No dice. 7:45, I call my neighbor and am silently thankful when she answers the phone cheerfully wide awake. 10:15, I wake up, call and cancel appointments for the day. 10:45, Oliver wakes up, we retrieve Sami from neighbors house and start our day.

Tonight has got to be better.

That is all.

*************

Update: 10:10pm, I sit here at my computer trying to finish this damn assignment and listening to the sounds of wakefulness from the next room.

A few days ago I took the children to the library in search of seasonal books to go with our homeschooling lessons. A quick look at some of the books on my list made me wonder if I would be able to engage Oliver with them: they were long on text and short on illustrations and only one of them had any kind of rhyming verse. Oh well, I thought as I hurried to check them out, Sami will be interested even if Oliver isn't. Well tonight, before bed, Sami selected "The Tomten" as his bedtime story. This is a book with lots of text and only so-so illustrations so I imagined that Oliver would just roll over and go to sleep, tuning me out altogether. I was surprised then to see Oliver repeatedly turning his attention to the book as I read. Sometimes he appeared to be studying the pictures as well. Nevertheless, I kind of hurried through the book then reached over and turned the light out. In a flash Oliver was out of bed, flipped on the light and retrieved the book from the floor where I had tossed it. He handed it to me and then crawled back in bed. I looked at him rather shocked and said: "What?" So he replied: "Read the book."

Making sure there was no mistake I asked: "You want me to read the book again?"

"Yes!" came his immediate reply as he reached over and opened the cover of the book.

It makes me wonder if all along I have been compensating for him too much by choosing books to read to him that were well below his age range. It would make sense that he would have trouble focusing on books that bore him. I guess I'll have to start visiting the library more often!

**************

Today was an amazing, wonderful day with the kids. The weather here in the middle of Virginia was warm and sunny -- 77 degrees!! Our major errand for the day was to drive to a farm about an hour away to pick up the meat we had ordered. Once a year we buy bulk beef and pork from a farm where they raise animals using totally sustainable, organic practices. I've never been much of a meat eater but now I can really appreciate the difference between good meat and what you buy at the supermarket. And the best part is that since we buy it in bulk it works out to be affordable. And we know the farmers and we get to visit the farm. On the way we stopped in a neighboring city so the kids could ride a mini train. They were both enthralled and I loved seeing them both so excited.

It was also kind of interesting to watch Sami start to make the connection between the farm animals and what we eat. On the way home I told Nik a story about our neighbor who had to get rid of her chickens because someone complained to the zoning inspector. She gave away a few and one of them ended up in her freezer. Sami had spent a lot of time with those chickens. He knew their names. A few minutes later I heard a small voice pipe up from the back seat asking: "Mommy, why did C. put the chicken in her freezer?" Immediately, I felt terrible. But I decided to be simple and forthright about my answer. "Because they are going to eat the chicken, Sami. Just like we had chicken for dinner last night." He didn't linger on the issue so I guess he wasn't too disturbed.

Here are a couple of pictures from the day.

Imagine That. ...

We're going through another sleep episode here. Or rather a no-sleep episode. Oliver has been awake for a good part of the last two nights, waking at 2am and unable to fall back asleep until 6am. The trouble is that when Oliver doesn't sleep he requires an adult to be with him or else no one else in the house would be able to sleep. He jumps on the bed and is just generally loud unless someone is there with him. Sometimes I get up with him and take him to the kitchen and we bake something. But sometimes I'm just not able to be wakeful and then it is a struggle between what we both need. So last night I tried something different. I laid next to him in the dark and told him over and over again that if he couldn't sleep he should turn on the light and get a book to read. Oliver isn't much into self-directed reading so I'm not sure this is the best strategy but I'm hopeful that we can help him find something quiet to do when he can't sleep. So around 5am he finally turned on the light, got a book and climbed back into bed, half-heartedly paging through it. When he closed the book I suggested he get another. Then another. After the third book he put his head back on the pillow and pulled the covers up to his nose. Then I told him that if he was ready to sleep he should turn off the light. He did this and was asleep within a few minutes.

It is hard for me to imagine a time when Oliver will be able to find ways to occupy himself but I am hopeful. I see him spending more time on activities and he is willing to sit though more varied reading materials. And it isn't hard for me to also recall a time when I found it difficult to imagine that he would be able to dress himself, use the toilet, brush his own teeth or ride a bike -- but he can do all of that now and I've begun to take it for granted.

And in the meantime, it is only sleep, right? And on the RDI-front, Oliver has probably mastered our current objective, which requires that he is able to adopt a studying response to uncertainty. Today I held out two hands, one of which had a surprise inside, and asked him to choose a hand. Very carefully he shifted his gaze from hand to hand, then he reached out and turned one of my hands over, looked at my closed fist for a second then touched the other hand to choose it instead and looked up at me to get my reaction. I remember trying to teach this to Oliver more than a year ago and being totally unsuccesful. He would always just randomly choose a hand, more to please me than out of any kind of consideration. After working on this for a couple of weeks I see that he is applying this new skill all over the place, trying to figure things out then looking at me for reassurance or more information.

I added two mantras to my desk-side window today: "Little by Little." and "In Our Own Time."

The people you meet

I think I've written here before about how much I love my neighborhood and our neighbors. It is so gratifying that all we need to do is step outside our door and we are right in the midst of a community of people who know and enjoy my children.

Yesterday the girls who live in a group house across the street came to play with my boys in the backyard while I tidied up the garden. When they were leaving they asked me if they might arrange a time next week to go swimming with the kids. Two of them are swimming instructors and they promised to teach Sami to swim without his water wings and to do a flip in the water. He is thrilled and I know Oliver will be, too. I love how they always come and sit on our porch or hang out with the kids on the sidewalk when they are between classes or in the early evening. I will be so sad when May comes and they all graduate.

Today the young man next door took the time to help both kids ride his skateboard. Afterwards he told me that he is an instructor in the adaptive skiing program at a nearby resort and wondered if I might bring Oliver there this winter to go skiing with him!! I was thrilled with this. I think he is maybe 24 or so and he wears a prosthetic leg and maybe it is the experience of being "different" that draws him to Oliver. But he always takes the time to come and say hello to my boys when they are outside and he always asks such good questions about Oliver.

Also, on a couple of occasions when Oliver has left the house more quickly than me when we were preparing to go somewhere they were immediately alert that Oliver was outside on his own and they always made sure that I knew he was out there and that he was safe. I can't tell you how comforting it is to me knowing that other people are watching out for him.

Three doors down from us lives a family that has become very special to us. They have a daughter who is a year younger than Oliver who has down syndrome. There is nothing, nothing, like having someone close by who totally gets what it is like to raise a special needs child while balancing the needs of the other children. Very frequently we call each other: "I really need to get out of the house with these guys. Can I come and hang out?" Or, if we know the other is struggling due to little patience or lack of sleep: "Why don't you send the kids down for an hour so they can play together." Also, because we know that the other one "gets" it we offer and take support without feeling bad about it. "Could you use a loaf of bread?" is code for: "Here, take this because then you don't have to make bread for a few more days." "Can I borrow a cup of rice?" means: "I just can't face loading my kids into the car to go and get one thing at the supermarket."

Then there is the guy who owns the eye glass shop on the corner. I've been in to see him so many times this year to get my glasses repaired. That's just the way parenting is for me: very physical. He has stopped being surprised to see me and invites me to bring the kids by to play in the kids corner whenever we want to. I've taken him up on a it a few times and I'm always rewarded by the extra big smile he gives to my boys when he sees us coming through the door.

Knowing these people who make extra room in their hearts and their lives for my children is its own reward. I often think about the turns my life has taken. I couldn't have imagined this life six years ago. I thought I would always work outside the home. I never, ever, would have considered homeschooling. But I probably wouldn't have taken the time or had the opportunity to know these people either. I'm not glad Oliver has the challenges that he has, but there is no denying that because of him my life is less superficial. And for that I feel entirely blessed.

ObamaObamaObama

"Heh. Did you hear that Mom? He said Obama!"

I can't remember exactly when this started. Sometime this summer. Sami thinks the word Obama is very funny, so lately he makes this commentary a dozen times a day.

The other day I was holding him on my lap and as he snuggled in I called him my little huggy baby bear and he said: "Yeah, and you're my little. ... Obama!" I took it as a compliment.

Sami is a lover of language and he is keeping a collection of funny words, which we try to use frequently just for his pleasure. They are:

Obama
slinky
Kinkos
serendipity
zagnut

Try working the word zagnut into a conversation.

What words do you or your kids love to use?

Here's Sami in action:

Self-Regulation

Judging by my last couple of posts you might be led to believe that Oliver still has tremendous challenges in self-regulation. And for the most part you would be right. But interestingly, this is an area where I also saw some growth this past week.

On Friday (which was when we were just starting to resolve things) we had some friends drop in just as we were finishing dinner. These are good friends of ours -- the kind of friends who know it is OK to just come by if they are in the neighborhood; the kind of friends who help themselves to a taste of whatever is cooking on the stove. One of the reasons I love these friends is because they ask the questions that other people might be afraid to ask. They always address Oliver as they would any other kid, they don't pretend that he isn't in the room just because he doesn't talk to them. And the male part of this couple always makes a special effort with Oliver. On this particular day, however, it didn't work. Oliver became so dysregulated that he actually bit him. Lucky he is missing two of his bigger teeth at the moment :-) When I told Oliver to apologize, he did, but then completely melted down. So I took him upstairs and we sat together watching YouTube clips of sesame street. I kept saying to Oliver: "Don't worry. We can stay here for as long as you want." Then, after each short video I would ask: "Are you ready to go back downstairs?" and Oliver would answer: "No. Stay Here." Then, after the third or fourth clip I asked him: "Are you ready yet to go downstairs?" and he said: "Yes!" Then he got off my lap, went downstairs and was fine for the rest of the visit.

On Sunday a similar thing happened. We went to a seasonal park that we had gone to a few times last year. The place is fantastic. They have a giant, underground slide that you go down on burlap sacks, pots and pans strung up that you can hit with giant sticks to make music, a tractor pulling a mini cow-train, animals made out of corn stalks that you can "ride", goats to feed, mini corn mazes, giant catapults, a full scale merry-go-round -- well, you get the picture. Anyway, Oliver LOVES this place and when we pulled up he couldn't get out of his seat fast enough. But almost immediately he began to sob intermittently. Nik kept shooting me quizzical looks: "What gives?" My theory is that he was so happy and so excited that he was just overwhelmed. So I took him to a quiet swing and did just as I had two nights before. I told him that he could stay there as long as he liked, that I would stay with him and we would swing together. Off and on I would ask him if he was ready to move on and he always answered: "No! Stay Here." Then, when he was ready, he said: "Let's go!" He was completely fine for the rest of the time there. In fact, we stayed almost three hours and they didn't want to leave.

So is this self-regulation? Oliver obviously understood that he just needed some time to get it together. He can also communicate a little bit better these days so that helped. Maybe in the past I hurried him back to joining the fray too quickly? Probably. Definitely. But what excited me was that Oliver now clearly understands when he is and is not emotionally regulated, and he understands what he needs to get regulated: time and space.

After a week of mostly dysregulation, it felt like a huge success.