I called Brent on the way home. I started out trying to be positive. I tried to say that while I had some reservations I thought it would work. Because I like to have decisions made. But the more I talked about my reservations the more I realized that they were fatal objections and we would not be sending Thelly to the Palmyra Academy. Which left me once again without a plan for Thelly for school which starts in just over a week.

Brent who is wise and well practiced at patiently exploring all options before making a decision suggested that I call the other Autism school in town that. I found out from the people at Palmyra that there is another school that is geared towards more high functioning kids and does not have an inclusion program (which I see as a bonus since I think the inclusion program is in actual fact an exclusion program). The problem that I knew existed with that school is that it is an hour from my house. And that makes it logistically impossible for our family. But Brent wanted me to call and find out if they have any transportation options. And he wanted me to call the psychiatrist and ask her if she had any suggestions.

I didn't want to make those calls. I was sure I already knew the answers. But there is hope that some day I will be able to move on from the only lesson I ever really get in the temple, because I did it any way. The far away school didn't answer and I left them a message (but it doesn't matter because I saw on their website that they do have an exclusion program, so they're pretty much out anyway.) I also left a message for the psychiatrist and when she called me back she gave me the names of three schools.

The first one she mentioned sounded quite promising. She read from their website that their

"program is beneficial for all students, including those whose academic success is compromised in the classroom due to learning differences and attention problems."

She said that's just a euphemism for Autism spectrum disorders which didn't bother me. Apparently I'm OK with some euphemisms. To me that sounds like "we're willing to take your kid who has issues whatever they may be and we're not going to label him and single him out because of them; we've got kids with all kinds of of different issues." The other two schools were in the same part of town as the really far school, and they didn't strike me as exactly what I was looking for anyway.

It was Friday at 3:00 and I had promised Migillicutty that I would take her and her friends to the mall at 4:00. (This would not be my favorite activity if they did it frequently, but since they do it about twice a year I don't really mind.) Plus it turned out to be fortuitous because this latest prospective school for Telly just happened to be a couple of blocks down the street from the mall.

I was sure they would be closed. I really just thought we would drive by and see the building; get a visual impression of the place. But when we pulled up there were cars. And the door was slightly ajar. Brent asked me later if it was a real school or just someone's in home pre-school type program that they are calling a school. I don't know what I said that gave that impression but I have to admit there was a bit of a home pre-schoolish feel to the school.

We met with the woman who appeared to be the owner/director/principal as well as the middle school teacher. There are three other classrooms whose age groupings vary each year depending on enrollment. But none of the classrooms are just one grade. The middle school has approximately 10 kids and she teaches them all together, or all individually in the case of math or in small groups when that is more appropriate.

For some time as I've thought about what I wanted for Thelly for this year I've had a general impression of this kind of school. I pictured a group of kids of different ages who for various reasons weren't going to public school and I thought that if I had the skills to do it I would just invite them all over here and I would make a school for them in the casita. And I would teach them all on their own level, doing some things together and somethings individually or in small groups, just trying to meet each child's needs.

This school is what I've been looking for. I think. Apparently I'm a pessimist because I keep thinking that it must be too good to be true. My idea of how things should be makes perfect sense to me, but since no one does it that way I had decided that there must be a reason. It must be a good theory but it doesn't work in practice or else people would do it, right? But this woman is doing it. And it sounds like it's working.

And I loved her attitude. She did mention that she had a child who was truly "mentally challenged." But otherwise she talked about her kids as moving at different speeds and having different abilities, strengths and weaknesses without seeming to label or categorize them. When she talked about teaching life skills she said she expected the kids who preferred to type their papers on their laptop to put them on a thumb drive and plug it into the printer to print their own work. Which is much more my speed than teaching them to put nuts and bolts together (one of the tasks at the other school). She said that she's noticed that some of her kids work better listening to music so she lets them bring their iPods if it helps them. Which is so much less patronizing than "your child will have a special box labeled with his name that has some of his comfort objects and when he needs a sensory break he can go to the calm zone and pull out his object until he feels up to rejoining the group."

I'm not saying what she is doing is functionally all that different from the Palmyra school, it's just that the attitude is so different. It comes from a perspective of expecting performance rather than expecting....nothing.

It's still pretty far away and I haven't quite settled the transportation issue yet. But I have a few options and I'm pretty sure I can make it work. It's 1/3 the price of the other school which is much more comfortable for us. The idea of committing to making monthly payments without a definite and dependable source of income to pay for it, isn't exactly the way we do things around here. We would have done it if it had been the right thing to do and I'm sure it would have worked out. But it's so nice (and rare) when the thing that you actually want isn't the most expensive option.

I still have a few lingering doubts. What if the atmosphere is so relaxed that it feels like home and he starts having tantrums? They are a Christian school and what if they turns out to actively teach against the church? What will happen if he just won't work when he's there? But I'm pretty sure those are doubts that are coming from my mind. My spirit felt very comfortable there.

I just hope it's not too good to be true.

The Search for a New School

I have talked to enough people and had enough experiences of my own with the school district to know that there will not be any school run by the school district that will meet Thelly's needs. They allocate their resources based on the severity of a child's problems. Since Thelly's problems are minor on the over all scale, he only qualifies for minor services. In other words not a special school with a program specifically tailored to fit his needs.

So I started looking at private schools. The private school the Migilicutty went to for 7th grade started an Autism program last year. It is separate from their regular program and the tuition is three times as much. But I figured if all of my kids are in school full time, I shouldn't have any trouble making enough money to pay for it. Brent joked that we should only have to pay a little bit of the extra tuition because Thelly is only a little bit autistic. And I laughed at that. But then I started thinking that it made a little bit of sense. He doesn't necessarily need to be entirely in their special program. In fact since they have such small class sizes he could probably be in the regular program and just have the teachers get a little extra help from the specialized teachers.

But it doesn't work that way. He's either in their "cross-over" program or he's not. And after meeting with them it was very clear that this was not the right school for him. I met with the director of the program and another mother who has a 9 year old with autism. The entire meeting was a reminder to me of why I've never been able to say "I have a son who is has Autism." I am not like those women. And Thelly is not like their sons.

The whole meeting with filled with terms like "children affected by autism" and "children on the spectrum," who are differentiated from "neuro-typical" children. And there were a million acronyms that they used fluently and expected me to understand like RDI and ABA and IEP (well yes, I know that one). The conversation included discussions of actions that were "behavioral" or "task avoidance" as opposed to...I can't remember what but I believe it would refer to something they had to do because of their atypical neuro-functioning. (I just made that one up, but if we're going to talk about neuro-typical shouldn't we also be able to call our kids neuro-atypical?)

These women had never met each other before but they knew all the same people in the community of "families affected by autism" and they are a part of all the same support groups. And there's nothing wrong with that. Except that I find it rather nauseous. And I know that I don't fit with them.

But mostly I know I don't fit with them because my son is not like theirs. In additional to all the buddy, buddy, we define ourselves as mothers of children with autism talk, there was a lot of talk about what the program at the school would be like. Each child would be evaluated individually and given tasks and assignments that would meet their own needs and help them to progress. But when the examples given are things like "teaching the child to clean a table" or "deliver a piece of mail with written instruction that tell him to say 'good morning Mrs. Jones' when he walks in the room", I start to think that this isn't the program for my son who has done all of the laundry for our whole family for the last two weeks and delivered birthday invitations to all his friends three days earlier.

I know Thelly isn't quite normal. I know he has some Autistic-like behaviors. But I haven't taught him to define himself as an Autistic kid. I treat him like a normal kid and I have rather normal expectations of him. For all these women talking about "children with Autism" rather than Autistic children, there's no doubt that they see their kids as Autistic. That's who they are. They are not normal, they don't belong with normal children and they never will.

So when they talk about "inclusion" which is a big part of the program at this school the whole thing starts to get ridiculous. We would be taking a child who has always been included, who has never been rejected by his peers, who is perfectly happy to hang out with other kids, who probably knows that he isn't exactly like the other boys his age but isn't sure quite why and doesn't think a whole lot about it, and we would be separating him from the normal kids and telling him that he doesn't fit with them because he is one of the retards (I don't care if you call it the cross-0ver program or the Autism program or the weirdos, it all means the same thing to the kids at that school.) And then at some point they would walk him across the play ground to the "neuro-typical" classroom and ask the kids in that room, who up until this year were his peers (one of them is in our ward so this is literally true) and ask them to be nice to him and pretend to include him. But we all know that they never will really include him ever again, because we have told them and him that he is not one of them.

I left the school unsettled and frustrated but at that point I had not formulated all of the above in to coherent thoughts. They were just general impressions of unease and I still didn't really have any other options so I was thinking that I might still send him there. I took an intake and a registration form and told the director that I would talk to my husband and then call her on Monday.

I'm Starting To Re-Think My Plan

Thelly is enrolled in an online school. He will have a teacher that will assign his work and be available to help as much as we need. But I am officially his learning coach and that really means I'm responsible for making sure he gets his work done.

And when I am responsible for making sure he gets his work done there is a lot of fighting. Because most days he cannot not do the amount of work that would reasonably be expected of a child in school (at any age). And many days he cannot do any work at all.

Of course that's not exactly true. Even on the worst days he can do work if he is given a large enough incentive. Remember the day I drove him to school threatening to send him back to his old classroom? He was about as locked up he could be that day but with a big enough stick he was able to move forward. It was ugly though. It was tears and screaming and hitting and serious emotional trauma on both sides.

Today the threat has been no birthday party. He gets closer and closer and closer to losing it every time. He gets stuck and says he can't do the laundry, he can't do his math, he can't go out of Dallin's room and he's not lying. He really can't. Until the threat is big and real enough he absolutely cannot bring himself to act.

Of course Jim Fay and Foster W. Cline, M.D. would just tell me to stop threatening and take away the birthday party. And they would be right if the goal were to teach Thelly that I mean what I say so that he would make the rational choice and get his work done next time. But Thelly knows I mean what I say. He just can't make him self be rational.

We talk about it all the time. "Thelly, is yelling and screaming going to make me change my mind?" "NO!!!" (imagine hitting and yelling sounds here) "Is yelling and screaming going make any thing better?" "NO!!!! (more screaming and hitting things). "So why are you continuing to scream and hit things when you know it will only make things worse for you?" "I DON'T KNOW, I CAN'T STOP, I CAN'T STOP, I CAN'T STOP!!!"

These scenes frequently end with him begging me to help him stop hitting his leg or stamping his feet or hitting the counter or whatever he is doing that is causing him pain but he can't stop on his own. No matter how much I love my son I cannot make him be logical.

So it's 2:00 and he's finishing up his sentences. He has also done 3 loads of laundry (he had an extra today because he was late for church yesterday) and he did 10 math problems on Khan Academy (awesome site btw).

Does that mean today is a victory? I don't really know.

On the one hand it seems extremely unhealthy. A 12 year old should not spend this much of his day crying. His mother should not have to sit right by his side (or literally on his lap so he can't dig holes into the skin on his feet) every minute in order for him to accomplish anything.

But at least he is accomplishing something. If I didn't push this hard, he truly would do nothing but play legos and the piano all day. Of course I've thought a lot about just trying to take away every privilege he might want so that he won't have anything to do until he does his work. But aside from that being impossible I'm not sure it would work. I'm pretty sure there is no carrot big enough. I think it takes a stick.

And at school it's no different. Some days his teachers could get him to do a little work. But many days they couldn't. He didn't have screaming crying fits. But he didn't get any work done either. They don't have big enough sticks at school. Not at any school. And that's why I don't have any real hope that there is a program out there that is going to change everything; because every program is based on rational and logical behavior. And Thelly's brain is broken.

So I see two options for school. I battle with him every day and he does work. Or he goes to school and sits and does nothing and then I battle with him outside of school hours to get homework done.

Or I could just bag the school thing all together. I could just say "Thelly is too mentally ill to educate." But I know that's not exactly true. So I could just try to teach him as much as possible entirely on my own, but without the added stress and pressure of an external system. Except that without that accountability I'm pretty lame.

And then there's the issue that I really think it would be healthier for him to be away from me and be directly accountable to someone else besides me. But then we're back to whether anyone else could actually get him to do anything. And would he be given homework that I would be responsible for getting him to complete? And would they be required to teach him "grade level material" when he's really a year or two behind? And everyone tells me that the resource program at the middle school is terrible and they won't help him at all.

But maybe there really is a school that could......

Surprise Garden

I tried having a compost pile for a while but it really didn't work for me. I put it at the back of my yard in a place where I couldn't see it, because it's ugly and I wanted it in a place where people couldn't see it. But there wasn't any way for it to get water there unless I did it by hand with a hose every day and that was never going to happen. Plus I had to to turn it and that was awkward and I just didn't ever really do anything with it. So every thing just sat here and dried out and didn't decompose.


So I got the bright idea to start just burying the kitchen scraps in the garden. I figured I'd just bury stuff in one half of the garden and plant in the other and then maybe switch each year or something. At least the compost was getting water so I was pretty sure it would decompose and I don't really mind turning over the garden so this seemed like a good solution.

But I was wrong. It wasn't just a good solution. It was one of the most brilliant things I've ever done in my entire life!!!!!

This year I planted in my garden: tomatoes, peas, beans, brussels sprouts, onions and garlic. That's 6 things that would have taken up about 10% of the garden.



However, this is what my garden looks like:

And these are the things that are currently growing in my garden:

Casaba Melon (or maybe those are different melons I'm not sure)

Pumpkin

Spaghetti Squash (with an inexplicably green bottoms)

Basil

Tomatoes

Cucumbers


Butternut Squash



lots of normal Spaghetti Squash



Watermelon


An Apple Tree


An Peach Tree



Onions



Lettuce (gone to seed)

Giant Sunflowers

Potatoes

Everything that I did not plant (the overwhelming majority of my garden) grew there either from the seeds of things I planted last year or the seeds of things we ate that got buried in the garden.

Throughout the spring I went out to my garden several times a week and found a scene similar to this. Since the sprouts of melons, squash and cucumbers all look the same, I never knew what was sprouting. So I just thinned down each patch leaving one or two that looked particularly healthy and let it grow. The result as a very good reflection of what we have eaten in the last year (or in the case of the cucumbers, things that I bought and then forgot to eat before they went soft and I threw them in the compost sack). The peach and apple tree should probably be moved from the garden but I'm wondering if they won't actually be good for shade in the heat of the summer. I'm still pondering.

And the tomatoes are fantastically more productive than they have ever been in all my years of attempting to garden. I've had promising tomato plants before, but not of them have ever made good on their promise before this year. Which I'm convinced is because they actually had good soil to grow in for the first time.
I'm totally in love with my surprise garden. It brings me joy every day. (Enough that I spent the majority of my day documenting it.)

I Should Write the Good Stuff Too, Huh?

The last week and a half have been really good. I don't know why we had that awful patch there for a few days.

I did talk to Thelly about whether this was really a road he wanted to go down again (as in the out of control tantrums for hours every day-road). We discussed the fact that he has a choice when he can tell he is getting upset to let those feeling escalate or get them back under control. We talked about the things he can do including praying and asking Heavenly Father for help.

It's possible that the conversation helped. There have been a few times when he has started to get agitated and he seems to make a conscious choice to relax. But then again, it could be an entirely random or drug induced mellow phase. I truly don't know. But I'm very, very happy about it.

Here are some other encouraging signs-as if the lack of blood drawing fits weren't good enough all on it's own.

Math is going well. He improves every day and chooses to do math over any other subject.

I've noticed him making an effort to join in conversations with other kids and adults. He has also started asking questions again which is something he used to do but I thought it lessened with the medications and I'm glad to see it return since it's a part of his personality.

But mostly I was impressed when he used a screw driver to remove the broken remnants of Monkey's chain guard from his bike. I had nothing to do with that whatsoever. He saw the problem, recognized the tool he needed to fix it, found the tool, used the tool and (of course) put the tool away when he was done using it. For that he got out of doing any more school work for the rest of the day. Which wasn't as extreme as it sounds since it was 3:30 pm when he told me what he had done. But I was grateful for an excuse to stop trying to get him to do work he wasn't going to do anyway. And he was grateful that I stopped trying to make him do work that he wasn't going to do anyway. So it was a reward well received.

I Think This Is Profound

I don't judge people because I think it's fun or even because I want to think I am better than other people-most of the time. I judge people because it's my way of protecting myself. If a person has problems that are of their own making then I don't have to worry about having those problems myself.

Easy example: a fat person has a heart attack, I think "I exercise and I'm not fat so I will not have a heart attack." It's easy I'm protected, now I don't have to worry about it happening to me.

A little harder: a teenager is rebellious and gets into trouble, I think "I will be a better parent, teach the gospel better, read scriptures more than they did and as a result my kids won't behave that way." Now I don't have to worry about my kids. It's such a relief.

Judging is my way of telling myself that I am in control of what happens to me and that if I do things right I won't have to suffer things that I don't want to suffer.

If I make the right choices I won't be depressed, I won't have physical ailments and the people in my life will follow my example and make good choices too so no one will ever hurt me.

It's not true of course. And it's also not kind. But it does make me feel a little better to recognize that I'm not a mean person. I'm just trying to protect myself from stress and worry. And I think that's a different-perhaps less villainous-type of self interestedness than judging just so I can show that I'm superior.

And it might help a little to recognize that people who judge me are almost certainly doing the same thing. They are trying to protect themselves from having to suffer things that they don't want to suffer. And that's okay. I can't blame them. They'll probably find out they were wrong for judging me at some point. And if they don't I should be happy for them. Right?

Why do you think you judge people? (Wow, only my third post and already I'm asking questions!)

He's Definitely Worse

Friday's episode was bad and I was a little worried that it might be foreshadowing of things to come. But in the last few months since the medications have stabilized there have continued to be occasional tantrums. On average I think about once a month and not bad enough to require any real intervention from us to keep from breaking things or hurting himself. So I hoped it was just another of those isolated incidents.

And then there was another fit on Saturday that kept him from going to Karate. And then another one Sunday that lasted so long we finally went in and laid down on top of him to help him calm down. And tonight I was cleaning blood out of the carpet again.

One encouraging point is that he seems more self aware and able to articulate what's bothering him and what kind of help he needs. But seriously, that's not much in the way of positives. We'll see how tomorrow goes. But I'm more than a little concerned about the trajectory we seem to be on. I guess I probably need to call the Dr.