Still not happy

Many of you have been asking how the IEP meeting went on May 21. Well it was successful in that we were not "forced" to make a decision about Sam's placement for next year. We made it clear that we wanted to see more programs, and that we couldn't make a decision based on seeing one program. The rest of the meeting was largely the teachers and therapists reports, a good portion of it negative, but some positive. OT is going well and he's made huge strides in that area. Physical therapy is also going well- he's shown a great improvement in gym and they have a good system worked out in that they bring him to gym early and the gym teacher explains what they are going to do, and he is able to handle it well with that pre-set.

Although I am glad we'll be able to see more programs, I'm still essentially unhappy about the whole outcome of this first year of school for Sam. I feel like the end conlcusion that has been reached here is about as bad as I could have envisioned it being at the beginning of this school year. At that time, I couldn't wrap my mind around the possibility of Sam being "banished" to another situation. I remember telling Becky last fall that I was fearing him being "kicked out" and I guess I had good reason to fear that.

The truth is, for all the talk about how things in education have come so far in helping kids with issues and keeping them in the "least-restrictive" environment, I still feel as if we are somehow being shown the door and are unwanted at CES. The lack of an appropriate classroom at our elementary school sends a clear message to me that their interventions will only go so far, they are unwilling to do the right thing to educate Sam, that it's easier to pawn him off on someone else so they don't have to deal with it anymore. At various times this year, I've felt our family being blamed for this situation, like me, Tom or Sam has had anything to do with bringing this situation on ourselves. For my part, I'm sure that at times I've blamed the teachers and staff, and most definitely the administration, for their part in making us feel like second class citizens. I've spent the last 16 years living in this town hearing about how wonderful the school district is, being lulled into a false sense of security, thinking my son would be ok and do well. Well, the real truth seems to be that the district is only wonderful if your child can fit into the "normal" category. Sure, they will try to help out if your child struggles with whatever issues, but the interventions only go so far, and if they can't conform, you are out the door.

I've decided the best placement for Sam is the one that isn't going to happen. He belongs in his own elementary school, in a classroom that can offer the proper support. The question of having the "population" to justify such a classroom is irrelevant to me- I don't recall sitting around in 2000 asking myself if it would be the right time to get pregnant and have an autism spectrum child just so he would be the only one in his age group when it came time for school that would have a need for this type of education.

Lately I feel as if this is all I think about and deal with. I feel no peace as the end of school approaches. I remember the emotional roller coaster ride I was on last year as we finished preschool and started off into the unknown of kindergarten. I had hoped for a better outcome, but I guess I didn't pray hard enough or work hard enough. It's tougher this year for me to be optomistic, but I need to be for Sam's sake. I don't know if I wish I still had that sense of false hope that entering the perfect elementary school last fall gave me. I hope I have learned from the past year that cautious is probably the best emotion I shoud be feeling at the start of anything new. My frustration at times has reached a point where I just feel so helpless, I know I need to take a step back and take a deep breath.

We are going to see another program over in Schenectady next week. It's in an elementary school 27 miles away, but really we are looking for a teacher and situation we can be comfortable with, and one that is going to make a difference for Sam. The meeting to make the "big decision" is Jun 13. Can't wait.

Templeton

Incidents like what happened tonight at the library make me realize how hard it is to exist in the real world sometimes. Sam was excited to go and see real live rats at the library. (the pet kind, not the wild kind) It was actually a program meant for older kids to discuss "Charlotte's Web" and someone from a local pet store was bringing in pet rats. I was hoping to just go in, peek at the rats, then head home. Well, we ended up sitting through a portion of the program, and Sam was very excited and wanting to touch and be up close. I managed to hold him off pretty well and to his credit, he did ok with waiting and even sitting and listening. (when I say he did ok here, you have to picture what "ok" means for Sam. I'm sure its nothing like what would be acceptable for most kids, but for me since he didn't just take off after the rats immediately and could be managed through verbal prompts for a short time, that was a success story) Anyway, when it came time to be able to touch the rat and feed it a sunflower seed, it got to be too much for him and he pinched the rat (kind of on the scruff of the neck like you would a cat) and then proceeded to scream at it a couple of times. Of course the thing was petrified, but luckily the handler had control of it. I'm sure she and everyone else in the room was disgusted by Sam's behavior, but I didn't stick around to find out. We left immediately.
I've gotten over the whole thing about how people react when things like that happen. They don't live my life or even know what it's like to deal with our issues, and frankly for the most part I don't care what a stranger's opinion is. I know the people who were there who know us will understand and probably feel sympathy for us. That's all that counts.
The one thing I'm still struggling with is my reaction to the situation. Somehow it doesn't seem appropriate to just not react at all (as if I could manage that!), but also blowing up and making a scene isn't the right approach. I guess what I'm getting at is that now I feel like my reaction has more to do with how bad I feel about his inability to handle things, than it has to do with being embarassed or disappointed that things like this often end in disaster. I'm reacting to the frustration that I feel when he can't do and experience things the way most kids can.
I don't know what else to do but to keep trying. It's like getting thrown off the horse and having to keep getting back on. I guess I shouldn't look at it as one day we are going to a program and it's going to be a complete success, perfect from beginning to end. I need to look at it as a process. Small things get better each time. Maybe I need to be able to pick up on cues better- know when he's not gonna be able to handle something and react before the problems occur.
I suppose I'm only human. I hope that each time we try something a little risky that the outcome is going to be a positive one. Maybe I just need to pick out the positives in each experience and learn from the negatives.

Reflections on my "career"

Just some thoughts since it's Mother's Day......
I have to say the the years since Sam was born have been the happiest of my life. Before his Asperger's diagnosis, things went smoothly along, and our family life was very happy. I've always said if only Sam didn't have to go to school, things would be so much easier. But, I know this is not reality. Despite the difficulties we've encountered with school situations, I can't say things are "normally" bad. Most of the time we just plug along like any other family. Once in a while we hit crisis mode, but I guess this is probably the same for anyone.
I enjoy being a mom. I sometimes wish things could be easier for Sam, but this is the only thing I would change. I only rarely feel like things get too much for me to handle, and when those times come up, I try to take care of myself so I can recharge and go at it again. Many times when I'm faced with a tough battle, I find I get motivated more to find a solution. With things so up in the air due to school situations at this point, I find myself wondering if things will ever even out and we'll get into a groove that will work for everyone, or if things will always be a struggle.
As his mother, I know I'm biased, but I think Sam is a great kid. He has a unique way of seeing things,which I find fascinating and in some ways, inspiring. He enjoys new experiences (even though he won't even try pizza!)- he's always up for a car ride to somewhere. He likes animals, hiking, reading, drawing. He loves to write books. There are probably 50 of them laying around the house right now! The stories are about his friends in school, cartoon characters, or animals. He almost always puts himself in the middle of the action. He has a stubborn streak, often refusing to do things when asked. I've always tried to think of ways to make him want to do the things he initially refuses to do. I've been pretty successful with that. Sometimes it takes many repetitions to get something turned around. For example, I'm in the third week of giving him a list of chores to do on a Saturday morning. He is still resisting doing the chores, but he is asking for the list before I have a chance to make it! He has a kind heart, and so far, aside from the frustration that school has brought, I don't feel like his self-esteem has been too damaged by his so-called "disability". He even enjoys school! I recieve far less grief from him sending him his kindergarten class than I ever did when he went to preschool.
Finally, I honestly feel like advocating for Sam has got to be what my "career" was meant to be. I never felt motivated enough through the years to pursue a field that would get me a job that meant something (to me or anyone else). I often felt a little odd being an educated person who chose to just work at menial jobs and let her husband support her. So many times in the past I couldn't see the importance of something I was doing. Now I realize I had a very important task on the horizon. I'm glad and thankful to be able to devote the time I have to making sure Sam succeeds. For the first time in my life, I feel a committment to something that is long-term and rewarding. The pay may not be that great, but I'm motivated by the simple fact that I can't afford to fail. This has already caused me to move out of my comfort zone, to contantly have to re-evaluate how I relate to the world, and to adjust my attitude to everything.
No, there really isn't anything I'd change about my experience being a mom!

Update

It's been awhile since I've posted, so I'll try to update you all about what's been going on. Tom and I had a conversation with the director of pupil personnel (known hereafter as Lori) and the princial at the beginning of the month. It went fine, but we did get the feeling that they steering us in the direction of finding another program for Sam for next year. Of course they make it clear that the decision is totally up to us, but so far I'm not really satisfied with the quality of the information I'm getting in order to make that decision. I 've felt from the beginning of this process that not much information is volunteered to you from the "powers that be". If you can think to ask the questions, they will be answered, but basically you have to pull them out of your head. I'm gaining more knowledge all the time about the right questions to ask, but I feel bad for the people who are just starting this process, or those that don't have the time or inclination to do the research necessary.
So an appointment was set up for us to observe a classroom in a nearby elementary school, not in our district. The classroom had 8 students and 4 adults. The children ranged in age from 6-8 and all appeared to be verbal. The program itself looked fine, some of the questions I had about things that were bothering me were answered to my satisfaction, but basically the same things that bothered me about the situation before I went in still did when I left. My biggest objection is the fact that he has to be sent out of our district. This feels like "banishment" to me, or like a way to pawn a difficult student off on someone else. The program looks as if it would benefit Sam due to its structure and tailoring toward Sam's specific issues, I just wish it could happen in our school.
I've had contact recently with 2 moms whose autism spectrum kids attend school in self-contained classrooms within their districts that are run by the schools themselves, and not an outside entity, like Questar. These 2 districts are of comparable size to ours. I brought this fact up to Lori, who says this idea is something that is re-visited every year, and so far has not happened due to a lack of population. I find it hard to believe that Sam is the only child at CES who would benefit from a self-contained classroom. I'm willing to concede that space constraints may render this change impossible while the school renovation is going on, but I think its something that needs to happen once the new school is finished.
My thoughts now are that I need to get a clearer picture of what the school can offer if we elect to keep Sam there. As Erin from CARD has let me know, pretty much the sky is the limit when it comes to designing an IEP. I just don't know if the interventions they can provide will be effective enough to make a difference in his behavior, and achieve the goal of integrating him back into a classroom situation he can handle. The program at Green Meadow school would definitely provide these kinds of supports, but I worry about the transition to a new school with new kids and new teachers, and then the transition back again. Granted, if he remains at CES, the building next year will be different, the teachers will be different, and he may only know one or two kids in his class (if he's even in one). But, he would still have the same therapists, and the same sort of routine, and contact with the same kids.
Luckily our annual meeting will not be for at least another 3 weeks, so I hope I have time to lay it all out and examine what really would be best for Sam. This is the bottom line, the most important thing of all. I'm not out to prove a point with the school district, I just want them to give it to me straight, so we can decide based on facts, and not something we make up in our heads.

RDI Information

For those of you who wanted to know more about RDI (Relationship Development Intervention), here is a link to their website:
www.rdiconnect.com

Sam has begun a class that is being run using RDI principles. It's a sort of "art therapy" class, run by a certified dance therapist who is going for RDI training right now. I found the facility that is doing this class, the Damselfly Center, by searching the internet while I was looking for something that Sam might be able to do over the summer. I've done a lot of reading on line about various interventions for spectrum children, and up until I found this, none of them seemed "right" to me, or seemed to fit Sam's situation. Something about Theresa Haney and the Damselfly Center seemed to make sense when I thought about what Sam might respond to. He's always loved music, has a strong interest in dancing, and is just beginning to be excited about how he can draw and create things for himself. When I started reading more about RDI and the results that some spectrum children were having, it also sounded like a good fit. Only time will tell for sure, but so far Sam seems to really like the class and enjoys being with the children in the class.
I think one of the great difficulties about dealing with the autism spectrum (and probably, I would imagine, any disability) is weeding through the sheer volume of information out there. Not everything will work or even be suitable for every person. People will of course be passionate and advocate for those interventions that have worked for their loved ones, and its up to us as parents to decide what might be the best course of action for our child. I guess the best we can do is trust our gut and the knowledge we have about our children.
At any rate, I'm hoping that this is good experience for us.

Everyday frustration

Another day in the life of the Doughertys. Things aren't going particularly bad or good, just some everyday frustrating things. One thing I'm very thankful for in life is my friends. They have been very supportive and helpful to me over the past few years, and I appreciate having that safety net around me. Occasionally, however, I come away from a get-together with them feeling more isolated than before I went. I know this is no fault of theirs, it's just sometimes I find it so hard to hear about all the activities their typically developing children engage in, how easy it is for them to get up and go to school each day, etc. It makes the distance between the life we lead here seem so far from the life other families lead. Sometimes I wish the most serious problem I had was what sport to sign my child up for, or what caterer to use for my upcoming party. I know that this is all relative- they have those things that they and their children struggle with, some of which we don't struggle with. They have never been anything but supportive of me, and welcoming of our family. Still I feel like maybe occasionally they get sick of hearing about the problems Sam has in school, the issues we have in relating to the school administration and teachers, etc. I know I get tired of it, and I'm living it! There are occasions when the job of trying to live as "normal" a life as possible gets very tiring for me. At times like these I just want to just live like the way I want to, and not have to fit my square-peg exisitence into a round hole. The truth is, I don't want my child to play in organized sports anyway, I don't want him to do things just because other kids are doing them or thats what kids do, I just want him to be happy, find a few friends, have a good time now and then. With these goals in mind and things broken down into snall, manageable units, I continue on and maybe will even live to enjoy another coffee hour!

A Better Week!

I'm happy and relieved to be writing this from a much better perspective than last week. I feel like the happenings this week have been a very welcome breath of fresh air into our lives. Almost like the beginning of spring is showing us that things are hopeful. First, there was a successful day at school on Monday. No outbursts, no incidents. A good report. Then, off to school again Tuesday. I was sitting at the computer catching up on some email when the phone rang- caller ID said it was "Schodack Central". All I could think was "Oh no- here we go again." Fortunately it was not bad news- Mrs. Cook was calling to tell me that school was being dismissed early due to a flood in the school basement, and that I could come and pick up Sam at any time. When I got there to pick him up, he was very upset to be going home. He was not understanding that all the kids were going home- he must have thought that he was in trouble again. I tried to explain what was happening as calmly as I could, then we laughed about how it would be hard to be in school with water on the floors. By the time we got to the car, he had calmed down and was excited about the prospect of spending the morning at Kathleen's. It took me all of 2 or 3 minutes to get him calmed down!
The problem in the basement could not be fixed in one day, so school was cancelled again today. I really feel as if this time is a gift- like it's just the breather we need to step back and get our footing again. Sam has had a really successful few days. He's been cooperative, happy and a joy to be around at home. He's willing to "go with the flow" and do things as they crop up. Any anxiety he has over routine change seems to be pretty easily gotten over. So tomorrow he'll presumably go back to school, then Friday he's off anyway due to scheduled conferences. Sooo, in my mind I just think "One more day to get through, then a 3 day weekend".
Of course I'm still concerned about his behavior last week. I know it's only been a few days of smoothness, but I feel like each day that goes like this, is another day "in the bank". I know the meetings will eventually get scheduled, and we'll be taking a hard look at everything that has happened. I hope 2 things happen if things are still going smoothly when we all get together and meet.
1. That enough time will have passed since the problems that the teachers will be able to see them in context.
2. That I don't get too complacent just because things are going well. I have to remember that the rough spots always return- the best thing I can do is make a plan to be prepared for them!
I keep thinking about what Becky's husband Jack said to me at the library on Monday night- that often behaviors will get worse (sometimes much worse) before they get better when an intervention is working. I know he's right- I've read it many times. It's good to hear it from someone else, though.