Where J is at and when he's the teacher and I'm the learner

J has been in the program at PSt.J for a week-and-a-half now. And before anyone even thinks I made him go there guess again. It's J's choice to go because he wants to have a better understanding of some of the things he does and why. I haven't forced him to go so if anybody thinks that then they don't know a damned thing about me or this family.

I've tried very hard to understand J and work with him and what works best - what he thinks is best for him. I try and accomodate him the best that I can but there are times when we have to compromise so that a particular outcomes benefits all of us here in the home, not just him. But that doesn't mean I'm trying to change him. puh-leese, far from it.

I'm saying this because I don't want people thinking - and I have a hunch some do from my last post - that I'm trying to change him. That's the farthest from the truth. But I will admit I worry because he's showing an increased amount of aggression and violence and his impulse control isn't what it used to be. And these things are worrying J too.

Something that has been noticed and discussed is the fact that J's aggression and violence isn't something exclusive to his previous middle school. The same things have happened at his current school and at PSt.J. He hasn't gotten his way with something, or he didn't like how something was done - in this most recent incident he was last for a game and he didn't like it. He wanted to be first and when he wasn't he got really mad about it - and he gets very angry and lashes out. He throws things, goes after people and tries to break things. These weren't isolated incidents because of Central's inability and unwillingness to accomodate him. This has happened elsewhere. This concerns me and J both, especially J because he doesn't like that he's doing this stuff and he's afraid they'll get worse and he'll end up hurting someone. He doesn't want to that. So this is something that's being addressed at PSt. J as well as here at home.

Is this changing him? Hardly. I don't believe so. I see it as him getting something under control and understanding what and why triggers his reactions.

Now that is one area where something is going to change. How I address things. J told me today that when he gets upset and lashes out those aren't behaviors he's showing. Those are actions and reactions to something that has stressed him out and upset him. He told me his behaviors are what he does every single day of his life and what make him, him. He asked me to stop calling certain things behaviors because they're not. He pointed out a difference to me and it makes a lot of sense. So I'm going to make a concerted effort to make sure I address his actions as actions and not call them behaviors. Because it's these actions we want under control, but the behaviors we don't want to change or make go away.

Doing it for himself

J begins at Prairie St. John's next Monday. He's going there for a four week out-patient day treatment program. This is something he wants to do. The reason being J has told me he's developing new behaviors that he doesn't understand or know where they're coming from and he doesn't like it.

This is something that has been going on since about the middle of May. I've noticed that he has had less control over his impulseness. He's been more antagonizing and less empathetic, taking pleasure out of seeing Y or I frustated with him. He's made Y cry several times and laughs at her. I haven't been sure what to do about this and considered getting him back in to see his therapist - who he stopped seeing because the last 5 sessions had gone nowhere.

Then I found out these behaviors were happening at school too as well as some of the old ones he had expressed at his old school had come back. He did great at his new school (the year ended 6/8/09 for him) and loves it there, but the staff were concerned about these emergent behaviors. They were especially concerned about him antagonizing classmates and going after students he didn't know or interact with antagonizing them or trying to start a problem or fight with them.

That last one was something new so, concerned myself, I talked to J about them. That's when he told me he didn't know where these new behaviors came from and he didn't like it. He told me they scared him a bit too.

That's when I brought up him going to Prairie St. John's. It's been mentioned before - back in March while still at the old school. He was adamantly against it. I didn't push it because I wanted to see how he'd do at the new school This time he showed interest and asked me if PStJ's program would help him understand where these behaviors are coming from and learn how to control them. I told him yes. He asked would the program help him develop other coping strategies. I told him yes. He then asked would the program help him try to understand the changes he's going through and the urges he's experiencing now that's he's going through puberty. I told him yes.

He said okay and asked me when can he start there. He told he wants to do this to understand himself now and keep what's going on from becoming a bigger problem in the future.

So, he begins on Monday. I don' t know who's happier me, because he wants to do this, or him because he is doing this. And the best part for him is his psychiatrist runs the program. He's been a patient of hers since he was 4 and he likes her. She's also one of the most respected psychiatrists in the Twin Cities. He'll be seeing her every day.

I don't know how many others have but, over the years I've had various people and doctors and teachers say that autistics aren't aware of themselves and what they do. BS. Tell that to my son. Better yet, watch his self-advocacy in action.

Words of Wisdom

My professor said something in class today that I feel is worth repeating. To paraphrase her -

Somebody may be well-educated but that doesn't necessarily mean they have the intelligence needed to make careful, thoughtful and right decisions about something.

I think this applies very nicely to a certain faction of the autism community.

Best Mother's Day Gift

I was supposed to go to class today, but with it being Mother's Day I just couldn't go. A lot of people weren't going to class today. Several other women I talked to in my Friday evening class who also had class today said they weren't going. So I don't feel so bad staying home today.

Y and J gave me my gift this afternoon and it was the most beautiful thing. Here it is.

I love Faeries, especially the Irish's Tuatha de Danaan. Finding any kind of statuary of them is near impossible and what I do find is extremely expensive. I love the more commonly known Fae which is represented here and so I collect figurines of them. This one has a special meaning to it because it represents my children. You'll notice there's three Fae children - one for Y, one for J and one for Y's twin that I miscarried.

Yes, Y was supposed to be a twin but I lost him at five months. I know the baby was a boy. Don't ask how I know, I just do. Circumstances then told me Y would have had a twin brother. Y knows this too. She says all the time how she feels he's with her. That twin connection that nothing can break. There are times J says he feels him too and he's told me a few times his older brother has visited him in his dreams. Laugh if you think it sounds corny; I think it sounds beautiful. I feel my oldest boy too, in my heart.

I stopped mourning long ago the baby I lost. I know live my life knowing he's with us somehow. So when Y and J gave me this statuary that represented my three children I thought it was the best Mother's Day gift ever.

Ack! Wait! Hello? *echo*

This is officially the quarter from hell. What I thought would be an easy class load has turned out to be anything but. One of the things I have to do is a paper for a Christian ethics class. The class is required since I'm going to a Catholic college. It's also part of my major requirement. I have to write a paper on "media tracking and ethics analysis". Here's the summary - choose a topic or event of ethical concern. Track how your issue/event is addressed locally, nationally, or globally as appropriate; analyze and critique the rhetoric being used to discuss issue/event, and bring it all in conversation with our class texts.

Since I live in Minnesota and it's something that's in the news, I'm thinking of doing my paper on the Somali population here and their rates of autism, and looking at it from an ethical perspective in regards to social work. I feel like this is a big task I'm taking on but this topic has intrigued me. Wish me luck if I do this.

In regards to J. He's doing great! He loves the new school. It accomodates everything he needs. He's so happy and that boy he was at the beginning of the school year - outgoing, confident, happy, conversational - is coming back. This school is a great fit for him. I just regret it took so long to get him there. All the months of fighting with his previous school could have been avoided. I don't know how long he'll be there but I'm hoping it'll be until he starts high school. It'll be a cold day in hell before I ever let him go back to the other school I can hardly wait to see the young man he grows in to at this school.

That reminds me, he has a new goal for his future. A Lego designer. He's decided if he doesn't make it as a zookeeper he'll work for Lego.

I think I'm going to get more active on Facebook. I have an account but I never use it. So if anybody sees a request to be friends, don't be surprised, it's just me. I want to stay in touch with people but until this quarter is over updating my blog will continue to be scarce like it has been. I'm really hoping to blog more once the quarter from hell is done. End of June.

Ch-Ch-Ch-Changes

One of my favorite songs by Bowie. I heard it earlier this evening and it seems to fit.

Good news on the horizon for J. He'll be starting at a new school within the next couple of weeks. I'm very happy about this.

There was a team meeting last Tuesday to discuss a whole bunch of stuff for J. I put it all out on the table and told the teachers present I blame the school, I blame them for what's happened with J. He started off the school year a confident young man who had definite goals and dreams for himself. Now he's very insecure and uncertain about himself and is overwhelmed by stress and anxiety and his recurring fears. It hurts to see him this way. The hardest part is J remembers when he was that confident young man and now feels he'll never be that way again. If I hadn't spent most of the year fighting to get his IEP followed and was told sooner than later when he started showing stressed behaviors I don't think things would be where they are now regarding him and school.

Yet, I can't be too sure about that. I know of other parents who have been having the same problems J and I have had with the school. And one of J's friends left earlier this year because the parents weren't happy. It makes me wonder if it was inevitable for J to go to a different school.

I mean, to give you all an example of how J felt about school. During the kid's spring break - which happened to fall right during my finals week too - I asked J about school and how it made him feel. Here's what he told me - and I wrote it down and brought it with me to the meeting.

-When J tries to advocate for himself no one listens, or they tell him no to what he requests or they tell him what he has to do instead.

-He feels very isolated and like he can’t see any of his friends.

-He sees other kids in school pushing and shoving or hitting each other – kids not on the spectrum – and nothing happens to them. They don’t get in trouble. *An example: a much bigger and taller boy shoved him into his locker once. A teacher saw it but did nothing about it. Yet, when he does something, even when it’s an accident, he instantly gets in trouble and he’s made to feel like he’s a bad kid.

-No one asks him what happened or gives him a chance to explain when something happens. They assume they know what happened in a situation, even when it was a complete accident. Or when he does get a chance to explain he feels no one believes him, that they think he’s lying to keep from getting into trouble.

-He knows he’s autistic, he knows he’s “different”. But to him, his different is normal. He doesn’t like being reminded he’s different, or how different he is. He doesn’t like that they make a point of telling him he’s different. He knows he’s not like other kids but he’s not that different from them.

That is how J feels about school. That is how it makes him feel. Not pretty, is it? And you can imagine how that's affected him.

So anyway, I made it very clear how furious I still was about J's suspension, and laid blame on the school. I said I wanted him out of there and into a different school ASAP. Things were discussed and it was agreed to. So everything is in motion.

One thing we discussed - and I mentioned this was brought up by J's therapist too - is that J seems to be stuck in these behavioral patterns that he can't get out of. I feel first school's unwillingness then inability to meet his needs put him there. And it's been these stuck patterns that have brought on the biggest changes in him and present the boy I describe above.

The new school isn't a day treatment program but they work similarly to one. J will have a team of teachers and therapists working with him, helping to regain that confidence and self-esteem he's lost and build and rebuild coping strategies. I've been told this school will work really hard to accommodate his needs too. He'll be on the road, beginning with small steps and working his way to being and feeling successful. And this school isn't a permanent placing. So, I'm hoping, when the time comes, he'll be able to go into the high school where Y is currently at

It's hard to watch my son go from a boy in fifth grade who was well-liked by his peers, had several friends, participated in the Science Olympics, was able to be an active participant in class conversations and activites and just be a boy, to a sixth grader who doesn't resemble that person at all now. J doubts everything he does now.

Although, not all hope is lost there. He's joining the track and field team. He'll be at the new school by then he'll still be doing it. He can't be denied it anyways since the school in the same district. I may have to drive him if transportation can't be arranged. I'm fine with that. So, despite his doubts, he knows he's still a good runner.

I have an intake meeting on Thursday and get to tour the school. J should be starting shortly afterward. J hasn't said too much but after talking about it and telling him this is a chance to become that boy he remembers so well he seemed to be okay with it.

Traits of autism

Y had her evaluation last month at the Fraser Center. The same two psychologists who evaluated J back in 2003 evaluated Y too. And like before, with J, they gave me more information in three hours than I got from the U of M in two visits. They were much more pleasant too. Their evaluation was much more in depth than the U of M's, so were the tests Y took. At least they seemed to be. In the end we were told Y has definite autistic traits but not nearly enough to give her a diagnosis.

This didn't surprise either one of us at all.

We were also told Y has OCD traits, but there too, not enough to give her a diagnosis.

The Sensory Integration was addressed too and given a closer look and consideration. The doctors both told me I was right to believe Y's SID affects her performance in school; affects her day to day life in general. They told me taking my lead from J regarding SID was a smart thing to do. From that they were able to give us a list of occupational therapist that Y can choose from to consider and see. This made Y very happy.

They looked over summaries from evaluations from other doctors and acknowledged Y's ADHD and depression and how, combined, they affect her school performance. The doctors mentioned how they thought Y getting involved in OT would help that. I brought up the fact that the U of M focused almost solely on her anger and what we saw as an over-exaggerated concern for it. Both doctors said they didn't see her anger as the issue and concern the U made it out to be. The one in particular said she thought Y's anger was related to her depression and SID. Those combined can cause anger issues. As long as she continues to see a cognitive therapist who she likes and is comfortble with she'll be fine. I asked if OT would help that and she said it might.

So, overall, it was a good appointment. We got answers that will help Y now and in the future. Once I get the summary I'm giving a copy to the high school and insisting Y get evaluated by the district. I was already told that will most likely happen once the summary is received. The school psychologist is giving it some serious consideration. I'm going to tell him to go ahead with it and that I want it done anyway. If I can get Y an IEP or 504 Accommodation Plan that will guarantee she continues to receive accommodations I will be very happy. Y will be too.