Sunday, December 23, 2007

A fun holiday trip to New York City!

Just wanted to report on a fun trip we took to New York City yesterday, December 22. It's become something of a tradition for us to take a day trip there for the last couple of years. This is the first year we felt comfortable bringing Sam. We always go with Tom's former college roommate Jon, his wife Kathy, and their 2 teenage sons, Brian and Sean. It's nice for us because Jon always drives all the way down. We park somewhere down near the Brooklyn Bridge, in the neighborhood of the federal building where Jon used to work. While Sam was slightly whiny about how long it was taking to get where were were going, he was not overly so, and enjoyed looking at everything once we got closer to our detination. Jon pointed out some of the landmarks, we saw a couple of huge cruise ships, and Sam enjoyed seeing all the ads on the buildings. We stopped at Battery Park so Sam could see the Statue of Liberty across the water, then parked and headed for the main attraction- the subway! Sam really seemed fascinated by the whole thing. He didn't want to get off once we got on, but we persuaded him pretty easily. We saw part of the holiday light show in Grand Central Station, then went to view the Christmas tree in Rockefeller Center. Sam loved going into the NBC store there! We ate at an Irish pub, and Sam was really well behaved. He drew all over the paper placemats at the restaurant, and ate a good meal of pasta and sauce.
Even with all the walking involved, it was clear he enjoyed the whole thing. He liked to be out walking on the street after dark and seeing all the lights. On the way home, we stopped in the Bronx on Arthur Avenue and had cappacinos and dessert at a little cafe. All this way past Sam's usual bedtime, but he did so well. He tried a cannoli and cheesecake!
I guess the key to it all was not trying to do anything ambitious. We kind of just played it by ear, and did whatever we felt like doing. Jon and Kathy were the perfect tour guides, and the boys are so nice to Sam. It somehow felt like the right time to take him there, and I'm glad he enjoyed it so much. You never know what is going to go well and what isn't, but I guess it's all about trying. Now I'd love to plan another trip down there- maybe in warmer weather!

Thursday, November 29, 2007

Changes....for the better!

Our fall continues to go well- I feel truly blessed that Sam finally seems settled in school and is enjoying himself. I'm seeing many changes in him that I never missed before, but it seems good to have him doing some things that maybe other parents take for granted.

For example, he talks about what happens in school a lot more than he ever did. Not all of it is negative, although he does like to talk about what happens when one of the other kids in the class gets in trouble. Yesterday he told me about how there is a field trip planned for after the holidays to the Empire State Plaza. I like how he's made a place for himself in his class, and he talks about interacting with his classmates.

He's also asking about a lot more "normal" kid things. He saw a commercial the other day for a stuffed Rudolph the red nosed reindeer that can be made at "Build-a-Bear Workshop". He wanted to know if there was one around here and could we go sometime! He's been talking about wanting to watch Christmas specials on TV and listen to Christmas music. He's excited for me to get the decorations out. In years past, he enjoyed these things, but he never seemed to actively participate- it was always someone else's idea.

About the only issue we are having currently is concerning "back talk". He lets you know he's displeased with what is being said by talking back in a stern voice. This is a great improvement over throwing things or knocking things over! Still, we will work on diminishing this behavior and replacing it with something more appropriate. We can use Rudolph as an incentive!

I'm really seeing so many positive changes- it's great! Often when things go along tranquily, I get complacent and just ride with it. I'm not naive enough to think we won't hit a rough patch now and then, but the good thing about this school situation he's in is that I have confidence they can handle it and move ahead. I really don't want things to go too well, lest the "powers that be" think he's doing well enough to leave the program next year.

We are looking forward to the holidays and spending time with family and friends. We're having a big family gathering here for the first time in many years, and Sam's got a few little cousins to play with. We are even going to take him to New York City for a day trip! I guess New York City doesn't seem so daunting after Disney World in August!

Thursday, November 8, 2007

A Fabulous Fall!

Once again, I find myself apologizing for not keeping up with this more regularly, but at least this time it's for a good reason! We have been having a really good fall! Most of this having to do with Sam's success at school. He's settled into his new school quite nicely, and we are seeing improvements daily. The year started out with us being uncertain of everything, and of course expecting things to be rocky due to the newness of the situation, but things began to even out about a month ago, and now Sam seems to be in pretty good shape.

For whatever reason, this fall he seems to be much more aware of his behavior. It seemed like most of the time last year he was not even aware of the things he was doing, or if he was, it didn't affect him at all, let alone enough to want to change what he was doing. This year maybe the difference is the smaller class, the more adult attention, the being able to work at his own pace, etc. We now normally get a good report home each day.

Tom and I had a conference with his teacher and social worker a couple of weeks ago. I can honestly say it was probably the first conference with a teacher that I had ever enjoyed, and not felt like I was either being 1. talked down to, 2. blamed for something, 3. asked what we were going to do about the problem, or 4. dismissed altogether. Both teachers expressed how much they liked Sam and how much he brings to their classroom. He's been tested in math and is able to work at a 3rd grade level. His teacher said she is going to be working with him on the computer. She also said he is going to be integrated into a high-level second grade reading group in January. Tom and I were surprised but happy to hear this, I hope he can deal with it.

The good part about having doubts about his ability to handle a situation is that I am confident they have the resources within this program to help him work through it. It's such a relief to know I can count on them to do their jobs, and help Sam succeed. I know they are not going to be calling us everyday making us aware of some atrocity that Sam has committed. I know they are simply going to deal with whatever comes up, and as a result, we are all feeling better about things.

Some of the things I thought might bother me about not having Sam stay at CES are not bothering me at all. I don't miss all the solicitations from the PTO for either money or involvement, I don't miss the daily exposure to the "cliquey" atmosphere. I enjoy being able to be friends (or not) with people on my own terms. I think Sam accepts being in the new school just fine. I've mentioned visiting the temporary CES and he always says he'd prefer to stay in the car. I know he misses a few of the kids he had in his class last year, and I think by the time they see him again, they will see a few changes. He's making friends in his class, although with all the kids from different towns, and no way of connecting with the other parents, it makes out of school connections pretty much impossible. Thankfully there are still the old playgroup friends, and neighbors down the street.

So much has changed for the better this fall. I'm so thankful for the opportunity to have Sam experience this program. Probably the best thing about it is that he can come back next year, same school and same teacher. The thought of being relatively stress-free where school is concerned for another year and a half is enticing!

Monday, September 10, 2007

New school year!

Well, the new school year has arrived! The summer seemed to go very fast. We spent a lot of it going from here to there, and it felt a little hectic. We had a couple of wonderful, memorable trips to Niagara Falls, Lake Erie and Disney World. Sam enjoyed spending time with Taylyn and Jeffrey. By the end of the summer, it was definitely time for some more structure in our lives, although Sam seemed to handle the lack of routine and structure this summer pretty well.

School started at Bradt Elementary school in Rotterdam last Thursday, September 6. We decided to drive him to school in the morning (30 minutes each way) since the bus would have picked him up at home 40 minutes earlier than I would have to leave to get him there on time. The drive so far has not been bad- it takes me about 30 minutes to do it. Most of the traffic seems to be going in the opposite direction. I can get him there any time between 8:15-8:30. His teacher, Ms. Breeyear, and the classroom aides are outside to meet the students.

The morning routine has so far gone well. The two best things about it are the year of experience we had last year and the fact that I can now stay in bed until 6:30!! Sam being used to the morning before school routine seems to be making a big difference in how the mornings are going. I've encountered no resistance to getting ready to go to school. I also think he likes being driven to school. Somehow it seems a little more relaxed than having to walk down the street to the bus stop and try to keep Sam out of the puddles and dirt piles while waiting for the bus!!

Each day he has a sheet sent home detailing the activities they do and his performance doing them. The first day was a glowingly perfect sheet where the teacher wrote what a joy it was to have him in the classroom. The second day there were a couple of check marks indicating he did not follow directions. Tom and I both agree that mistakes are good where he's concerned. He's in this program for a reason, and we really hope his difficulties get worked on. He hasn't talked a lot about school yet, but he seems to like it. At least he's not saying anything negative.

He is tolerating the bus ride home well so far. It takes about an hour for him to get home. There are three students on the bus total. The driver is a nice lady, a grandmotherly type whose name is Dorothy. I'm sure by the time he's riding home on the bus, he's so tired from the day he's just zoning out. He arrives home at about 3:45, which is way late compared to last year's 2:15. It makes my afternoon seem really long- I was so used to having to drop whatever I was doing at 2PM to go pick him up at school.

So we can't complain so far. I know there is probably a period of resisitance coming up- once he figures out the routine and the newness wears off. I'm also sure they are used to that sort of thing in his class. I hope to be better prepared to deal with that this year than I was last year. Better to make plans for a rough period to happen now and not be caught off guard.

I'm thankful for all the experiences we had last year in kindergarten, even the negative ones. It has made a difference with my outlook knowing we have a year of school under our belt. There were so many positive changes that took place last year, it would be impossible to chalk it up as a miserable failure. It really was a kind of experiment to try things and see if they would work out. I like to think that as a result of that experiment, we've gained some insight into how Sam ticks, and can now address more specifically his needs in a much more appropriate setting. We just have to keep slogging through.

Friday, July 6, 2007

View from the beginning of summer

First of all, let me let everyone know how sorry I am for not keeping up with the blog! As usual, things get busy and I get so involved with everyday life that I don't make time to sit down and update. One good thing is that in general, if I haven't posted, it probably means things are going fairly well, and I haven't felt the need for theraputic writing!

I was just reading over my previous entry on June 1. I'm happy to say that we are feeling better about things since that post, largely because the program we went to see at Bradt Elementary School in Rotterdam turned out to be a postive thing. We went into the visit there not expecting much, and we were pleasantly surprised.

The classroom is run by BOCES in a primary school in the Mohonesan school district. The whole school is only K-2nd grade. It's pretty big, but also nicely laid out and pretty convenient to get to. The class itself is going to have 8 students, with one teacher, Miss Breeyear, and 2 aides. There is also a social worker, and the usual army of therapists. While we were there, all the kids seemed to be functioning well in the classroom environment. The teacher had a good handle on the class, and the kids were all participating like you would expect kids in school to do. While the teacher was talking to us, the kids all did a craft project at the tables with the aides helping them, and we never even noticed how efficiently they did the project, no hassles, no issues. The teacher is young, and seems very nuturing and enthusiastic. She was very receptive to the idea of me coming into the classroom once in a while to help. The structure of the class seems very appropriate for Sam, and also there is the aspect of being able to adjust the curriculum to his abilities. I was able to bring him over the class to check it out the day after Tom and I were there. He joined right into an activity that they were doing, and he seemed quite happy with it. Honestly, he's nver had any trouble walking into a situation, the issues only come later once he's figured out what he can and can't get away with. But I am cautiously optomistic that this program will be able to deal with his quirks.

The distance from home is probably my biggest concern. Transportation issues are going to be worked out, but if it's going to be acceptable to us is another matter. The thought of him being on a bus for hours isn't appealing to us at all, so we'll have to see what happens. I'm not opposed to transporting him one way myself- hopefully it would be on the way home.

I feel somewhat better about how things were left at CES. I've come to realize that the bottom line is the quality of the education that Sam receives in the appropriate environment for him. I know I wouldn't feel as confident about first grade if he were staying at CES. It's just been demonstrated this year that they are not able to handle it. I'm annoyed that I was led to believe that it would all work out, and that interventions and strategies to help Sam only went so far there. I also realize that maybe our case is somewhat unique, we never had the preschool situation that would have prepared him for kindergarten, so he started out behind the 8 ball. There are times I really blame myself for not seeing his issues earlier, so he could have had a better head start. I'm trying to just look ahead and hope that we can play catch up in the next couple of years. I have no doubt that he'll be able to return to CES, and I hope I feel confident about that return. I'm glad that we won't have to deal with the whole temporary classroom issue (I've heard nothing positive about that so far).

I am feeling better about how things might go in the fall. I know it will be a rough start with the changes and everything, but I'm hoping at least this environment will be one in which he can learn a lot, have his issues worked on in a positive way, and feel comfortable about school. In the meantime, I'm hoping to enjoy the summer. There was no place left for him in summer school, which I'm glad about. I feel like we all need a break from the day to day grind. I'm not convinced that summer school does as much good as it might seem to. He will be continuing therapy 2 days a week with his therapists from CES, so that's a good thing. They were all very effective, and never had any problems with him. We'll be doing some traveling, and seeing some friends. Probably by the beginning of September, I'll be glad to hand him over to teachers!

Friday, June 1, 2007

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.

Thursday, May 17, 2007

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.

Sunday, May 13, 2007

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!

Wednesday, April 25, 2007

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.

Sunday, April 1, 2007

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.

Tuesday, March 27, 2007

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!

Wednesday, March 21, 2007

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.

Saturday, March 17, 2007

Continuing difficulties

I'm sitting here looking out the window at 2 feet of new snow as I reflect on the end of an incredibly difficult week. I've lost my composure on several occasions over the past few days, and right now I'm feeling shaky at best. This weekend is going to be all about getting back in the driver's seat- getting to a place in my mind where I can go forward.

I'm having a great deal of difficulty dealing with the fact that Sam has been unable to get it together and keep it together at school. I know a lot of his problems lately are due to the fact that he's stuck in one of these "down" times. It seems like when he's like this, there is a cloud in his mind that anything has a hard time getting through. Regular day-to-day functions are very hard for him, let alone learning anything new. By contrast, when things are good and he's functioning to full capacity, most things seem to be easy for him. The very hard part for me is at this point in time is how to get him out of this current trend.

I wonder what will happen at school. Of course I'm very nervous about sending him back there on Monday. His principal assured me that this is what they want, but I'm afraid of getting the phone call to come and pick him up. I hope to be able to clear my head and write down a few things for the upcoming meetings that we will have. I don't know what to do about school for the rest of the year- do we modify things in small chunks temporarily until things turn around? What about next year? I don't know what the right option is for his schooling. Will a smaller class help? It's all so up in the air. I hope that Erin from CARD will be able to help us with some new answers. Sam can't be the first child who has had these problems, so there must be some way of helping him.

I'm slowly working my way back to determination to not let Sam's diagnosis control our lives. It's so hard when we are continually beat down, but there's no way I can give up. I guess taking it one day at a time is truly what we need to do to get through this. That, and pray that the "cloud" in his mind will fade and some clarity will be restored.

Tuesday, March 13, 2007

Kindergarten so far

Just to bring people up to date, Sam started kindergarten in September 2006. The transition was about as difficult as it could have been. We weren't prepared for how hard things were going to be and how many different strategies would have to be implemented. Right from the start the teachers and staff at his school were very eager to help and come up with a plan to make it work. They kep assuring us that they would work it all out, and of course we did whatever we could to help them along.

It took awhile, but by mid-November, things started to improve. Sam was given a regular schedule of sensory "breaks" during the day so he could take a breather, and have some down time. He was pre-set for regular activities during the day and also for when changes to the routine were going to happen. He started to respond to these interventions, and had a fairly smooth time of it from December-mid February.

Sometime around Valentine's Day, things started to deteriorate again. At first there were minor problems- he was non-cooperative, he was screaming out at various times during the day, he didn't want to do his work. During February there were 2 1/2 snow days, then February vacation, then his birthday on March 4. Since the return to school after the break, things have gotten steadily worse. His episodes of screaming and throwing objects have increased dramatically, culminating in the episode yesterday where he threw a pencil box (it appeared to be deliberate) at the teacher and hit her.

Of course I am deeply concerned about these "outbursts". I am saddened, frustrated and confused about why this is happening. His "fits" seemingly come out of nowhere- but we all know practically that this isn't the case. Something has to be setting him off, and he has to be receiving a huge payoff for it to constantly be reinforced. I feel as if I'm failing him in not being able to come up with an effective strategy to help him manage his behaviors.

It's always been his pattern from babyhood that he has had periods of time where lots of aspects of his life are difficult for him, then things get better for an extended period of time, then back to difficult again. I intend to make it a goal of mine to
1. Better predict when a "low period" is coming
2. Recognize it when it's here
3. Come up with strategies to use that will help him deal with the tough periods when they occur.
4. Help him to enjoy and acknowledge when he's enjoying success during his "good" periods.

I know I'm probably not making much sense, but I wanted to get across in a nutshell what we've been dealing with over the past few months. Most of the time, life goes on as relatively peaceful and normal. We enjoy the same activities many families do. Unfortunately, there are those times when we go into crisis mode. Our entire lives are colored by Sam's difficulties at school. I spend nearly every waking hour (and some non-waking!) trying to think outside the box about how we can learn to live with the challenges that Asperger's Syndrome brings, and not let it define our lives.

Monday, March 12, 2007

Hello and welcome

Hello and welcome to our special blog. I have had thoughts on and off of doing this for awhile, and I guess I've finally been driven to it by the need to be able to communicate with people. Our family is very fortunate to have so many people who care about us, who care about Sam, and are genuinely interested in what's going on with him. One thing I find very difficult is keeping everyone informed about Sam's day to day life, about his successes and about his challenges. I hope to be able to document some of what our life is like, the good and the bad, and maybe keep the people closest to us informed. I also would welcome hearing from anyone who is facing the same types of challenges we are, to be able to share thoughts and offer support.

Our son Sam is 6 years old and was diagnosed with Asperger's Syndrome at age 4 1/2. Since that time, he's made remarkable progress on some fronts but has continued to face many challenges on others. Right now he attends kindergarten in a public elementary school and is in an integrated classroom (some children with special needs, some that are "typical") Our school district has been extroidinarily supportive and adaptible. He had a very difficult start to the school year, then after implementing various strategies, he achieved a good degree of success for several months. In the last month or so, however, things have gone downhill again and we find ourselves back to the drawing board. My fears are that he will not be able to "make it" in the public school, and that we will have to place him elsewhere, effectively ending what little social connections he's made at his school now. It's so very frustrating to me that we are failing him by not being able to get to the bottom of his issues.

Sam is truly a blessing to my life. Despite the frustrations and hard work that being the parent of a child with an ASD involves, I'm happier than I've ever been in my life. I feel I'm a fighter, and I don't intend to give up seeking the best for my child.