I've posted a few times here that we have had a HUGE victory in finding a dance class for Ballerina. It took ages to find it, but we have a great thing going. The only problem we have been having is getting the word out. I'm convinced that, if people knew about it, they would be begging to get their kids into such a class.
But if I'm right, they AREN'T learning about this class. There are only 2 students enrolled. Ballerina and another little girl who just turned 5. Together, they have been coming to The Studio Of Dance every week. And they have been participating in the class. They are working on ballet and tap. They play games. They march around the studio. The model for the mirrors. And they are having a lot of fun (well, at least my Ballerina is -- I really can't speak for the other girl).
Earlier today, I received what I am interpreting as a disturbing email. This little girl's mother has decided to "take a break". They are hoping to return to the dance class later in the year, but for the time being they feel that they are better off eliminating this activity from their schedule. This is their prerogative. I know I can't complain about that. But there are only these 2 kids enrolled in this class right now. With her withdrawal from the class, that means that Ballerina is the only student. I don't know if they can offer such a class for just one student.
I'm really not sure what to do to spread the word. I have told everyone I know about this program. I contacted a local sports organization that runs sports programs for special needs kids to let them know this was going on (it wasn't a program they were running so they weren't in competition), but no one there would get back with me. I told both Ballerina's and Music Man's school programs and they sent home flyers for us. And today (after receiving this email), I wrote an article and submitted it to The Germantown Patch, a local web-based newsletter that contains local events and descriptions of local organizations. Hopefully, they will publish this in the near future and that will lead to more students enrolling.
But we can't lose this. If the class is cancelled, I will try to enroll her with the typical class that they run, just the younger group (don't know if she has the discipline to be with the kids her age). But this was something that I was so proud of -- a class that would teach special needs kids, specifically kids with autism, dance. The environment is more relaxed here. The expectations are more flexible. And Ballerina is simply LOVING it!!!!! I just don't want to see them have to take it away.
If there is anyone reading this who has more suggestions of how to spread the word of this program, I'm all ears. I know my specific reasons for wanting this is specifically for Ballerina, but the special needs community around here deserves it as well.
This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information. I just want everyone to know that this blog is ANECDOTAL and based on ONE FAMILY'S EXPERIENCE; it does not exist to present scientific facts (unless I specify otherwise).
Wednesday, November 30, 2011
Monday, November 28, 2011
Where are we headed?
Time to go back in time. We go to see the developmental pediatrician for the first time. It's March 12, 2009. The twins are exactly 26 months old. I'm struggling with both of them in both the waiting room and then the exam room. No one comes with us. We have no idea where we are. We just know that there's a speech delay. At the end of the (approximately) hour-long appointment, I'm walking out in shock because this doctor told me that both of my twins were "clearly on the spectrum". And then, she followed that statement with, "That means they are autistic."
The next 2 days have vanished from my memory. I can only assume I went through them in a complete and total fog. But on March 14, 2009, we climb into our fully-loaded SUV for the 14 hour drive to Orlando, FL to spend a week in the world of Mickey -- a previously planned vacation from reality where we can just be a family.
When we returned on March 23, our new lives were about to begin. Services began shortly after that. And we were thrown into the "Autism World". Therapies were being described to me and I would allow the information to sink into my brain. Options for programs were discussed. Causes were debated. But it felt like it was happening to someone else.
Now fast forward to present day.
(this picture was uploaded from the Facebook Page "Recovery and Hope")
I'm not really sure how or when it happened, but some time ago, I reached this point. I embraced this reality. I still struggle with the reality of everything. From the beginning I had a personal goal of both Ballerina and Music Man entering a typical kindergarten classroom -- that's what this was all about -- working with them so by the time they were ready to enter kindergarten, they would be like everyone else. Well, that was proof that I didn't understand what we were dealing with. But I did have hope that they would be able to succeed in a typical classroom setting. And I have maintained this goal for both of them.
That is, until about 8 months ago, when I spoke to the kindergarten teacher at "The Learning Center" at our local elementary school. I had been watching a typical kindergarten classroom all school year by volunteering in Big Brother's class. I saw what was expected of them -- the independent nature of their work and how they were expected to, in many ways, teach themselves. I still hoped that, at least Ballerina, would be ready for this setting, just with a little bit of help with speech and OT. But I couldn't see Music Man getting there in just over a school year. So, I spoke with this teacher. That was yet another wake-up call. At the end of this conversation, I quickly realized (even though I wasn't really ready to say it) that this special education class was appropriate for Ballerina, not a typical classroom. And I saw how far Music Man had to go to be ready for even this setting.
Music Man's Annual IEP Meeting was earlier this month. I had discussed with his program that I wanted him to attend this kindergarten classroom next year. And we developed his goals with that objective in mind. But at the end of the meeting, the administrator started laying the seeds for me to recognize that this may not be the ideal placement for him. He has several of the skills that he needs, but not others.
So, once again, I'm needing to remind myself to take that moment and think about what is best for my son. It's the same question that I've been asking for nearly 3 years. I need to remember to see the truth and not my own picture of what's going on. My hopes for my kids cannot be what decides their future. The truth must be the first thing we consider. Once again, I need to remind myself of that picture above....."Dear Destiny, I am ready now."
The next 2 days have vanished from my memory. I can only assume I went through them in a complete and total fog. But on March 14, 2009, we climb into our fully-loaded SUV for the 14 hour drive to Orlando, FL to spend a week in the world of Mickey -- a previously planned vacation from reality where we can just be a family.
When we returned on March 23, our new lives were about to begin. Services began shortly after that. And we were thrown into the "Autism World". Therapies were being described to me and I would allow the information to sink into my brain. Options for programs were discussed. Causes were debated. But it felt like it was happening to someone else.
Now fast forward to present day.
(this picture was uploaded from the Facebook Page "Recovery and Hope")
I'm not really sure how or when it happened, but some time ago, I reached this point. I embraced this reality. I still struggle with the reality of everything. From the beginning I had a personal goal of both Ballerina and Music Man entering a typical kindergarten classroom -- that's what this was all about -- working with them so by the time they were ready to enter kindergarten, they would be like everyone else. Well, that was proof that I didn't understand what we were dealing with. But I did have hope that they would be able to succeed in a typical classroom setting. And I have maintained this goal for both of them.
That is, until about 8 months ago, when I spoke to the kindergarten teacher at "The Learning Center" at our local elementary school. I had been watching a typical kindergarten classroom all school year by volunteering in Big Brother's class. I saw what was expected of them -- the independent nature of their work and how they were expected to, in many ways, teach themselves. I still hoped that, at least Ballerina, would be ready for this setting, just with a little bit of help with speech and OT. But I couldn't see Music Man getting there in just over a school year. So, I spoke with this teacher. That was yet another wake-up call. At the end of this conversation, I quickly realized (even though I wasn't really ready to say it) that this special education class was appropriate for Ballerina, not a typical classroom. And I saw how far Music Man had to go to be ready for even this setting.
Music Man's Annual IEP Meeting was earlier this month. I had discussed with his program that I wanted him to attend this kindergarten classroom next year. And we developed his goals with that objective in mind. But at the end of the meeting, the administrator started laying the seeds for me to recognize that this may not be the ideal placement for him. He has several of the skills that he needs, but not others.
So, once again, I'm needing to remind myself to take that moment and think about what is best for my son. It's the same question that I've been asking for nearly 3 years. I need to remember to see the truth and not my own picture of what's going on. My hopes for my kids cannot be what decides their future. The truth must be the first thing we consider. Once again, I need to remind myself of that picture above....."Dear Destiny, I am ready now."
Thursday, November 24, 2011
Happy Thanksgiving!
This year, we did the family holiday in our own way and on our own. We didn't travel to NY or CT to visit with the family. My parents were unable to come because they were expecting company at their home. Kevin's family will be coming down here (well, many of them) this weekend. But for the actual day, we are on our own. And in many ways, that's a good thing. The insanity that goes with travel in general we don't have to address. And with the holidays, it's even worse because the traffic on the I-95 corridor is, simply put, a nightmare.
But on the my Autism Facebook Page, all month long I've been saying what I've been thankful for in daily posts. Today, I posted a picture I found from another page and said that I was thankful for autism. What I said was, "On this Thanksgiving Day, I'm going to say I'm thankful for autism. There are days, and there are moments that this statement is true and false. If it wasn't for autism, I'd be rushing through everything and not appreciating all of the accomplishments. If it wasn't for autism, I would miss the moments. And, if it wasn't for autism, would we have had Mozart, Gallileo, Van Gogh, Einstein, Edison, Grandin, etc.? And without autism, who would my Little Ballerina and Music Man be? Sometimes you have to take the bad with the good." And I mean this, with all my heart, despite all the things I have said about autism in this blog in the past and will probably continue to say in the future.
I am also very thankful to have such a wonderful husband who takes such good care of us all. Not being with family for Thanksgiving this year was made much easier by him making our little family a semi-traditional Thanksgiving meal (the only reason I say "semi"-traditional is the dessert had a slight twist to it). He spent the last few days working on making a perfect meal for the two of us (because none of the kids were going to have any of this. We had a perfect turkey, stuffing (cooked both within and without of the bird), potatoes, home-made oatmeal bread, gravy, corn and green beans, and of course, cranberry sauce. Then, to finish off the meal, he decided to experiment, and specifically for me, he made pumpkin bread pudding. He knows that I love bread pudding, and lately have found a passion for anything pumpkin flavored. What better dessert could there be???? (and he was right). We learned of the pudding from watching Throwdown With Bobby Flay on The Food Network.
So Happy Thanksgiving to anyone reading this. I hope you had a good year and that you took the time to appreciate all of your blessings.
But on the my Autism Facebook Page, all month long I've been saying what I've been thankful for in daily posts. Today, I posted a picture I found from another page and said that I was thankful for autism. What I said was, "On this Thanksgiving Day, I'm going to say I'm thankful for autism. There are days, and there are moments that this statement is true and false. If it wasn't for autism, I'd be rushing through everything and not appreciating all of the accomplishments. If it wasn't for autism, I would miss the moments. And, if it wasn't for autism, would we have had Mozart, Gallileo, Van Gogh, Einstein, Edison, Grandin, etc.? And without autism, who would my Little Ballerina and Music Man be? Sometimes you have to take the bad with the good." And I mean this, with all my heart, despite all the things I have said about autism in this blog in the past and will probably continue to say in the future.
I am also very thankful to have such a wonderful husband who takes such good care of us all. Not being with family for Thanksgiving this year was made much easier by him making our little family a semi-traditional Thanksgiving meal (the only reason I say "semi"-traditional is the dessert had a slight twist to it). He spent the last few days working on making a perfect meal for the two of us (because none of the kids were going to have any of this. We had a perfect turkey, stuffing (cooked both within and without of the bird), potatoes, home-made oatmeal bread, gravy, corn and green beans, and of course, cranberry sauce. Then, to finish off the meal, he decided to experiment, and specifically for me, he made pumpkin bread pudding. He knows that I love bread pudding, and lately have found a passion for anything pumpkin flavored. What better dessert could there be???? (and he was right). We learned of the pudding from watching Throwdown With Bobby Flay on The Food Network.
So Happy Thanksgiving to anyone reading this. I hope you had a good year and that you took the time to appreciate all of your blessings.
Sunday, November 20, 2011
Making a change....
......I'm not sure if this will have any real benefit, but I'm going to try to start anonymizing (if that's really a word) my blog. I'm putting it out in more and more places and my kids are starting to get older. They deserve to have their privacy protected.
Therefore, I'm going to change their names. Daniel is now "Big Brother", Rachel is "Ballerina" and Simon is "Music Man". Only the names have changed. The ideas and stories will continue as they always have. I may slip from time to time and use their real names, but I noticed whenever I guest post somewhere I don't use their names. If I'm concerned there, I should be concerned here.
Thanks!
DRS_Are_Best
Therefore, I'm going to change their names. Daniel is now "Big Brother", Rachel is "Ballerina" and Simon is "Music Man". Only the names have changed. The ideas and stories will continue as they always have. I may slip from time to time and use their real names, but I noticed whenever I guest post somewhere I don't use their names. If I'm concerned there, I should be concerned here.
Thanks!
DRS_Are_Best
Wednesday, November 16, 2011
When is a "Grudge" no longer a "Grudge"?
When do we switch from acting based on a grudge to seeing the truth? That's something I've been asking myself for the last few Saturday afternoons.
Simon has been attending the music (group piano) class Harmony Road 1 since September. We have missed only one class (but still made up for it in our own way). But going there is getting harder and harder. I still harbor so much anger towards them about how this class began (see my earlier post). I see the behavior of the kids in this class and I become furious. They spend much of the class playing the piano over the teacher talking. Simon doesn't do that. When we are working at the whiteboard, these kids actually LIE so they can get second or third turns before Simon gets a single one. Simon doesn't do that. And Simon is learning what is being taught. Yet Simon was the one who was complained about. I'm STILL angry about this.
But I am finding myself wondering if I have him in the right class. I can tell he doesn't like the work -- he wants to do things his own way. He refuses to answer any of the teacher's questions. He will answer them for me. He refuses to write on the board. But he will acquiesce if the teacher will do "hand-over-hand". I think next time I'm going to have the teacher "help" him to do it wrong, just to see if he (and she can use this for the class) recognizes that it's incorrect.
Ever since his IEP Meeting, I find myself really questioning how much he really understands. How much does he comprehend what's going on around him? Am I falling into my father's trap of thinking that the fact that he's reading is so important (in my father's case it's the toilet training)? Yeah, he knows over 200 sight words. Yes, he knows to sound words out (and is often reasonably successful) if he doesn't know them. But then when he can't tell you who the main character is, does that really matter? Yeah, he knows what a treble clef is, and he can find "do" on the piano (as well as re, me, fa, and sol which is as far as they have progressed), but he can't read them when presented to him. Nor can he tell you where on the staff they belong. Is that a sign that he's not ready for this class?
In the beginning of the semester, there were complaints about Simon's behavior. There were concerns about his ability to handle this class. Now I'm wondering, behavior issues aside, were they right? He comes every week. But what is he really learning?
This is what I hate about autism in Simon. With Rachel, I can figure this out. I can see if she is learning. I can see where she needs the extra work. Simon just baffles me. That "splintered learning" thing really just gets in the way. If he can do this, he SHOULD be able to do that. But that's simply not the way it is. He can do A, C, E, F, G, and I but not B, D, or H. With him, we always seem to walk away from things with more questions than answers. Even in this one place where I thought he would really excel, I'm forced to question whether I'm pushing too hard, just because I got angry.
Simon has been attending the music (group piano) class Harmony Road 1 since September. We have missed only one class (but still made up for it in our own way). But going there is getting harder and harder. I still harbor so much anger towards them about how this class began (see my earlier post). I see the behavior of the kids in this class and I become furious. They spend much of the class playing the piano over the teacher talking. Simon doesn't do that. When we are working at the whiteboard, these kids actually LIE so they can get second or third turns before Simon gets a single one. Simon doesn't do that. And Simon is learning what is being taught. Yet Simon was the one who was complained about. I'm STILL angry about this.
But I am finding myself wondering if I have him in the right class. I can tell he doesn't like the work -- he wants to do things his own way. He refuses to answer any of the teacher's questions. He will answer them for me. He refuses to write on the board. But he will acquiesce if the teacher will do "hand-over-hand". I think next time I'm going to have the teacher "help" him to do it wrong, just to see if he (and she can use this for the class) recognizes that it's incorrect.
Ever since his IEP Meeting, I find myself really questioning how much he really understands. How much does he comprehend what's going on around him? Am I falling into my father's trap of thinking that the fact that he's reading is so important (in my father's case it's the toilet training)? Yeah, he knows over 200 sight words. Yes, he knows to sound words out (and is often reasonably successful) if he doesn't know them. But then when he can't tell you who the main character is, does that really matter? Yeah, he knows what a treble clef is, and he can find "do" on the piano (as well as re, me, fa, and sol which is as far as they have progressed), but he can't read them when presented to him. Nor can he tell you where on the staff they belong. Is that a sign that he's not ready for this class?
In the beginning of the semester, there were complaints about Simon's behavior. There were concerns about his ability to handle this class. Now I'm wondering, behavior issues aside, were they right? He comes every week. But what is he really learning?
This is what I hate about autism in Simon. With Rachel, I can figure this out. I can see if she is learning. I can see where she needs the extra work. Simon just baffles me. That "splintered learning" thing really just gets in the way. If he can do this, he SHOULD be able to do that. But that's simply not the way it is. He can do A, C, E, F, G, and I but not B, D, or H. With him, we always seem to walk away from things with more questions than answers. Even in this one place where I thought he would really excel, I'm forced to question whether I'm pushing too hard, just because I got angry.
Saturday, November 12, 2011
Dancing and Listening
I know....Saturday morning and I'm writing a blog post. I'm sitting here, between activities in our ridiculously insane Saturday, but I want to write this while I'm thinking of it. What better way to take advantage of a "quiet" 35 minutes, right?
Our Saturdays typically begin with Rachel's dance class (well, at least that's our first "activity"). I have wanted to experiment with Rachel and her Focalin dose for a while -- I wanted to see if she could handle the dance class without the ADHD medication. One of the benefits of Focalin is that it's so short-acting that you can take days off without any real consequences. And that's a good thing because we haven't had any for the last few days. Yup.....we ran out and even though I called the doctor's office to get a refill, because it's a controlled substance, it cannot be called into the pharmacy, but mailed to us so we have the original prescription. And the doctor's office is far enough away and my week was crazy enough that I decided to ask them to mail them rather than driving into Fairfax, VA to pick it up. I think I now regret that decision as it has been a week and still no prescription (and they can't deliver it through another Children's Hospital Outpatient Clinic -- it has to be where this doctor resides).
So, time to take advantage of the opportunity......can Rachel handle her dance class without her dose of Focalin? The only way we are going to know is to try. So, let's give it a try!
When we arrived , she was far more animated than usual when we arrive at class. She's talking up a storm, surprising her teacher and the mother of the other little girl in the class (she's normally very sedate, thanks to the effects of the Focalin). I let the instructor know that we are without the medicine this morning and that I'm really not too sure what to expect. Everyone took a deep breath and the class began.
I could tell immediately that this class was going to be different for Rachel. First, she didn't seem to want to go into her assigned studio, but to the one across the hall. But that was corrected quickly. Now, normally I don't hear her at all. Today, she was running around and talking quite loudly. I poked my head in and she was having a very hard time sitting in her hoop (her guaranteed space -- the other little girl is supposed to allow her this space). She was fascinated by the mirror and kept running over to it. But they were able to get through warm-up and stretching time. I just stuck around trying to blend into the background (unsuccessfully of course). Onto ballet. Rachel was doing a little better. She liked to point her toes. But she was clearly distracted. After a few minutes, the decision was made to abandon formal teaching and they played through an obstacle course (jumping, balancing, crawling through a tunnel and "log roll" along a mat). This was better for her. It was clearly a "game" which held her interest a little better. As long as she wasn't waiting. When she was waiting, she found a corner in the mirror with the added reflections which she just LOVED!!!!!!
When they switched to taps, once again instruction began. But this was more interesting. She really was trying. I could see the effort. But, again, she was distracted. She would start doing what was expected of her and then would either forget what that was or would switch her attention to something else. But she was still having fun.
I would call this experiment a "fail". However, it wasn't a "colossal FAIL". But she clearly isn't ready right now to be expected to perform in any classroom setting with any focus without the aid of medication. I'm glad that things worked out well and that there were no serious consequences -- she still had fun and she still learned. She didn't cause or create havoc. She didn't run off. But she just wasn't receptive to learning the way she needs to be.
The only way we were going to know if this was a good idea was to try. So, today we tried. And now I know. She still needs this. We'll probably try again in 6 months or so. I'm glad we tried, and I'm satisfied with the answer.
Our Saturdays typically begin with Rachel's dance class (well, at least that's our first "activity"). I have wanted to experiment with Rachel and her Focalin dose for a while -- I wanted to see if she could handle the dance class without the ADHD medication. One of the benefits of Focalin is that it's so short-acting that you can take days off without any real consequences. And that's a good thing because we haven't had any for the last few days. Yup.....we ran out and even though I called the doctor's office to get a refill, because it's a controlled substance, it cannot be called into the pharmacy, but mailed to us so we have the original prescription. And the doctor's office is far enough away and my week was crazy enough that I decided to ask them to mail them rather than driving into Fairfax, VA to pick it up. I think I now regret that decision as it has been a week and still no prescription (and they can't deliver it through another Children's Hospital Outpatient Clinic -- it has to be where this doctor resides).
So, time to take advantage of the opportunity......can Rachel handle her dance class without her dose of Focalin? The only way we are going to know is to try. So, let's give it a try!
When we arrived , she was far more animated than usual when we arrive at class. She's talking up a storm, surprising her teacher and the mother of the other little girl in the class (she's normally very sedate, thanks to the effects of the Focalin). I let the instructor know that we are without the medicine this morning and that I'm really not too sure what to expect. Everyone took a deep breath and the class began.
I could tell immediately that this class was going to be different for Rachel. First, she didn't seem to want to go into her assigned studio, but to the one across the hall. But that was corrected quickly. Now, normally I don't hear her at all. Today, she was running around and talking quite loudly. I poked my head in and she was having a very hard time sitting in her hoop (her guaranteed space -- the other little girl is supposed to allow her this space). She was fascinated by the mirror and kept running over to it. But they were able to get through warm-up and stretching time. I just stuck around trying to blend into the background (unsuccessfully of course). Onto ballet. Rachel was doing a little better. She liked to point her toes. But she was clearly distracted. After a few minutes, the decision was made to abandon formal teaching and they played through an obstacle course (jumping, balancing, crawling through a tunnel and "log roll" along a mat). This was better for her. It was clearly a "game" which held her interest a little better. As long as she wasn't waiting. When she was waiting, she found a corner in the mirror with the added reflections which she just LOVED!!!!!!
When they switched to taps, once again instruction began. But this was more interesting. She really was trying. I could see the effort. But, again, she was distracted. She would start doing what was expected of her and then would either forget what that was or would switch her attention to something else. But she was still having fun.
I would call this experiment a "fail". However, it wasn't a "colossal FAIL". But she clearly isn't ready right now to be expected to perform in any classroom setting with any focus without the aid of medication. I'm glad that things worked out well and that there were no serious consequences -- she still had fun and she still learned. She didn't cause or create havoc. She didn't run off. But she just wasn't receptive to learning the way she needs to be.
The only way we were going to know if this was a good idea was to try. So, today we tried. And now I know. She still needs this. We'll probably try again in 6 months or so. I'm glad we tried, and I'm satisfied with the answer.
Friday, November 11, 2011
Shameless Self-Promotion and an Apology
A post I wrote has been made one of the posts on The SPD Blogger Network yesterday afternoon. Please feel free to come and check it out!!!!!
Who's Afraid of the Big Bad Dentist?
Also, my apologies for the rambles that was last night's post. I just wanted to get it all out so I can organize my thoughts. I was so tired and apparently had been really stressing about this meeting because I got my first decent night's sleep in WEEKS last night when this was over! So, thanks for putting up with me!
Who's Afraid of the Big Bad Dentist?
Also, my apologies for the rambles that was last night's post. I just wanted to get it all out so I can organize my thoughts. I was so tired and apparently had been really stressing about this meeting because I got my first decent night's sleep in WEEKS last night when this was over! So, thanks for putting up with me!
Thursday, November 10, 2011
Annual Meetings
Well, the second Annual IEP Meeting is behind us now....Simon's is done. So, we're done with these for a while, right? Nope.
As I was packing Rachel's bag this morning, there was a note. "This looks familiar", I thought, and read it. It's an invitation to another IEP Meeting in early December. At the moment I'm not sure what this is about -- is it the start of the placement process or planning the transition? Is there a problem? Is it just to discuss the evaluations that need to be done? I really don't know. I sent an email to her teacher this morning to ask and still have not received a response. I will give her until Monday and then will contact the Autism Office to find out what this is about. But I have to leave it alone for right now, because Simon's meeting was about to happen and I needed to have my head on straight.
Simon has been in this program since he turned 3. But unlike Rachel, the program hasn't really changed around him. It has remained the same and he has been made to acclimate to what they do. Don't get me wrong. He has done really really well there. And, even though I wasn't seeing it for a long time, is truly thriving. But the don't have the same flexibility that Rachel's program does, being in a full elementary school. He isn't eating lunch in the cafeteria with typical children. He isn't playing on the playground with his typical schoolmates. He isn't able to be incorporated into a typical pre-K setting. All of his exposure to the students there has been with kids with special needs, just like him. I have worked to give him some exposure to typical kids so that when he's NOT in school, he can handle himself and succeed. Perhaps even to thrive.
But the program itself really suits him. It's small enough that they are able to address his specific needs and he is happy to go. Since his last meeting he has learned to read and manipulate numbers. He has learned to take turns. He has learned to try new things, both in his activity choices and with his foods. He's even learning to void in the toilet. These are all steps in the right direction. And he is doing well. Prior to his meeting, I reviewed the draft document (minus one page) in pretty thorough detail, even more than I did for Rachel's. It had quite a few aggressive goals. They are really focusing in language development and comprehension for this last year of preschool. And these skills are being applied not only for reading, but for mathematics and even self-help type skills.
Happily we are all on the same page of what we need to work on. We all agree that he has made tremendous progress. We all agree that he is a very special little boy with a lot of issues that he has to learn to overcome. However, we don't seem to agree on where we should go from here.
There are several programs offered by our area's public schools for children on the spectrum. Some are more intense then others and then there are students who, even with an IEP have been fully incorporated into the mainstream educational classrooms. This is what I hope will happen for both Rachel and Simon, and something that I would like to see happen sooner rather than later. But we aren't there yet. And for Simon, we are considerably further away than for Rachel. Simon tends to "wander". I don't mean in a dangerous sense, but when he decides he's done, he will walk over to the book corner and grab a book and read it quietly. There are much worse things he could be doing, but this is something that will not be tolerated in a typical classroom. He also prefers a solitary existence. He doesn't want to interact with his peers. We are starting to notice an improvement in the way he interacts with adults or with his siblings, but in general, he would rather find an activity and be by himself. Again, these are behaviors that we need to work on so that he would "fit in" a more typical classroom setting.
Overall, the meeting did go well. But a few realities were made clear to me that I'm not sure I'm ready to take in. His learning continues to be "splintered" rather than "sequential", which has been true from the beginning. He has skills that make him appear advanced, but he doesn't have the precursors to those same skills that most children seem to have. He doesn't understand greater or less than, but he can add 2 numbers without thinking. He can look at a stack of objects and know how many there are, but he can't tell you that the book he's holding is the shape of a rectangle. When we asked him at dinner tonight to show us the "longer" french fry (there were 2 in front of him), he didn't understand and picked up the (considerably) shorter one. He can read pages of text, but he demonstrates practically zero comprehension of what has been said to him or in what he has just read.
These are the skills we are working on. We will continue to address where he should be placed as the school year continues and I do believe we will make the correct decision. My desire as to what program I would like to see him attend has been made perfectly clear and was put on the record during this meeting. And it is one of the 3 probable options. I just don't know if that's going to be the right decision when the time comes.
And I thought it was difficult making these decisions for preschool. UGH!!!!!!
As I was packing Rachel's bag this morning, there was a note. "This looks familiar", I thought, and read it. It's an invitation to another IEP Meeting in early December. At the moment I'm not sure what this is about -- is it the start of the placement process or planning the transition? Is there a problem? Is it just to discuss the evaluations that need to be done? I really don't know. I sent an email to her teacher this morning to ask and still have not received a response. I will give her until Monday and then will contact the Autism Office to find out what this is about. But I have to leave it alone for right now, because Simon's meeting was about to happen and I needed to have my head on straight.
Simon has been in this program since he turned 3. But unlike Rachel, the program hasn't really changed around him. It has remained the same and he has been made to acclimate to what they do. Don't get me wrong. He has done really really well there. And, even though I wasn't seeing it for a long time, is truly thriving. But the don't have the same flexibility that Rachel's program does, being in a full elementary school. He isn't eating lunch in the cafeteria with typical children. He isn't playing on the playground with his typical schoolmates. He isn't able to be incorporated into a typical pre-K setting. All of his exposure to the students there has been with kids with special needs, just like him. I have worked to give him some exposure to typical kids so that when he's NOT in school, he can handle himself and succeed. Perhaps even to thrive.
But the program itself really suits him. It's small enough that they are able to address his specific needs and he is happy to go. Since his last meeting he has learned to read and manipulate numbers. He has learned to take turns. He has learned to try new things, both in his activity choices and with his foods. He's even learning to void in the toilet. These are all steps in the right direction. And he is doing well. Prior to his meeting, I reviewed the draft document (minus one page) in pretty thorough detail, even more than I did for Rachel's. It had quite a few aggressive goals. They are really focusing in language development and comprehension for this last year of preschool. And these skills are being applied not only for reading, but for mathematics and even self-help type skills.
Happily we are all on the same page of what we need to work on. We all agree that he has made tremendous progress. We all agree that he is a very special little boy with a lot of issues that he has to learn to overcome. However, we don't seem to agree on where we should go from here.
There are several programs offered by our area's public schools for children on the spectrum. Some are more intense then others and then there are students who, even with an IEP have been fully incorporated into the mainstream educational classrooms. This is what I hope will happen for both Rachel and Simon, and something that I would like to see happen sooner rather than later. But we aren't there yet. And for Simon, we are considerably further away than for Rachel. Simon tends to "wander". I don't mean in a dangerous sense, but when he decides he's done, he will walk over to the book corner and grab a book and read it quietly. There are much worse things he could be doing, but this is something that will not be tolerated in a typical classroom. He also prefers a solitary existence. He doesn't want to interact with his peers. We are starting to notice an improvement in the way he interacts with adults or with his siblings, but in general, he would rather find an activity and be by himself. Again, these are behaviors that we need to work on so that he would "fit in" a more typical classroom setting.
Overall, the meeting did go well. But a few realities were made clear to me that I'm not sure I'm ready to take in. His learning continues to be "splintered" rather than "sequential", which has been true from the beginning. He has skills that make him appear advanced, but he doesn't have the precursors to those same skills that most children seem to have. He doesn't understand greater or less than, but he can add 2 numbers without thinking. He can look at a stack of objects and know how many there are, but he can't tell you that the book he's holding is the shape of a rectangle. When we asked him at dinner tonight to show us the "longer" french fry (there were 2 in front of him), he didn't understand and picked up the (considerably) shorter one. He can read pages of text, but he demonstrates practically zero comprehension of what has been said to him or in what he has just read.
These are the skills we are working on. We will continue to address where he should be placed as the school year continues and I do believe we will make the correct decision. My desire as to what program I would like to see him attend has been made perfectly clear and was put on the record during this meeting. And it is one of the 3 probable options. I just don't know if that's going to be the right decision when the time comes.
And I thought it was difficult making these decisions for preschool. UGH!!!!!!
Tuesday, November 8, 2011
Anxiety
I don't think parents of special needs children are more anxious about anything as much as they are about the dreaded "IEP Meeting". And I have to count myself in that group.
Simon's IEP Meeting is on Thursday. I will be going to school to visit and observe tomorrow (Wednesday). I have reviewed his draft IEP document and have a couple of questions, but they are minor. But once again, I'm about to sit in a room that is going to define his next academic year (but I realize this time that we aren't going to be seriously considering kindergarten placement yet) and I find myself wondering if I am making the best decisions.
Is my desire to have him attend this particular program for kindergarten really the best option? Because all of the goals and objectives have that plan in mind. There are many reasons I want him to go to this particular program. Some are for his benefits and others are for mine. And there's always that thought in the back of my mind of putting Rachel and Simon together again, a dream that I (apparently) still haven't fully let go.
I don't know if we are going to take the time during the meeting to discuss the options (even though we won't reach a decision). But, unlike for Rachel, I'm really not sure what the best choice for Simon will be. Either way, I hope that we can discuss it rather than have one of us dictate to the other what should be done.
Simon's IEP Meeting is on Thursday. I will be going to school to visit and observe tomorrow (Wednesday). I have reviewed his draft IEP document and have a couple of questions, but they are minor. But once again, I'm about to sit in a room that is going to define his next academic year (but I realize this time that we aren't going to be seriously considering kindergarten placement yet) and I find myself wondering if I am making the best decisions.
Is my desire to have him attend this particular program for kindergarten really the best option? Because all of the goals and objectives have that plan in mind. There are many reasons I want him to go to this particular program. Some are for his benefits and others are for mine. And there's always that thought in the back of my mind of putting Rachel and Simon together again, a dream that I (apparently) still haven't fully let go.
I don't know if we are going to take the time during the meeting to discuss the options (even though we won't reach a decision). But, unlike for Rachel, I'm really not sure what the best choice for Simon will be. Either way, I hope that we can discuss it rather than have one of us dictate to the other what should be done.
Sunday, November 6, 2011
Halloween
All right, Halloween was nearly a week ago and we don't live in an area that had to postpone Halloween because of the snow/ice storm, but I hadn't had the time to write about the experience. At least I'm only about 6 days behind.....
But we had been preparing for Halloween for a while. Daniel has wanted to be "Darth Vader" for MONTHS. This desire was so strong, I went and ordered his costume before school started so I could be sure that he got the costume that he wanted. I found one (amazingly) on sale and he was very happy with the results. But he's the easy one. As a typical kid who is really into Star Wars, he likes the idea of playing this character. He will act out all of the light saber scenes when watching the movies and he is now watching Clone Wars on DVD as we are working to get him caught up. To him, it's all fun and a great chance to play dress-up without fear of what it may look like to others.
Rachel was also relatively easy. Over the last few months, she has discovered the game of "dress-up". She has enjoyed putting on her princess dresses and her Tinkerbell costume which she has had for a couple of years. She likes to wear her "Fairy Wings" and more than anything, she wanted a tiara. So, for Halloween this year, I bought her a princess costume, with a tiara. She loves it and just ate it all up.
But Simon......that's the hard one. He doesn't like things that alter his perception of reality. He doesn't like things that are out of the ordinary. He likes things to be predictable. He wants things to stay just the same day in and day out. He's like Knit-Knots from the first season of Imagination Movers on Disney Junior -- boring and predictable. That's how he likes it. Halloween is anything but. Last year, he really showed us how much he despised the holiday. He didn't want to get into his costume (cowboy). Trick-or-treating was not thought of as a fun activity. He was the concern.
This year I selected his costume very carefully. I made sure his costume was one that would easily fit over his clothes so he wouldn't have any problems with the way the costume felt against his skin. I made sure that there was no hat required or no mask. And I found one that really seemed to suit him -- Mater, from the movie Cars. He really doesn't care for the movie, but he does enjoy the shorts "Mater's Tall Tales". Every time he sees Mater, he immediately will shout, "If I'm lyin', I'm cryin'!!!". (it really is very cute) So, I purchased the costume and crossed my fingers.
With Simon, we have learned that sometimes if you prepare him, it will backfire. It seems to tell him that this is something to be afraid of. Sometimes, if you allow something to sneak up on him, it seems to come out better. The hard part is determining which circumstances require the preparation and which should you just allow to happen. This time, we decided to just allow Halloween to come up and see if it went better.
So, on Halloween morning, Simon went to school. The other 2 were home because of a school holiday (since Simon's school is TECHNICALLY outside of the public school system, he has a different schedule than the other two). He went to school with his costume attached to his backpack and we were going to come visit for the party and we'd see how it was going. When we arrived about 1.5 hours later, he had just gotten into his costume and he wasn't quite sure what to make of it all. But he wasn't fighting anyone. When we arrived, Rachel and Daniel were both in costume (Daniel minus the helmet) and I think he liked what he was seeing. All of a sudden he was more willing to participate. We all went on a small Halloween parade around the school and went trick or treating in the various classrooms/office. He was really having some fun. He stayed in his costume until shortly before the 3 of us left and we took the costume home with us.
That night, I hoped to be building on that success. Last year, Simon didn't want to get into the costume and he DEFINITELY didn't want to leave the house to go trick-or-treating. But this year, putting the costume on was reasonably easy. He was fighting a little bit, but in a playful way. We found a small bucket for him, anticipating that he would only visit a few houses, and the 5 of us set out to go Trick-or-Treating.
We went to the first house and rang the doorbell. After the door was answered Daniel immediately said "Trick-or-Treat!!!" (he was going to do a Darth Vader thing, but the excitement of the night took over -- he's only 6 after all). Then it was Rachel's and Simon's turn. Rachel said it and then tried to go into the house (which became her pattern everywhere we went). Simon said, at the top of his lungs, "TRICK-OR-TREAT!!!!". Then he was given candy in his bucket. He SMILED! He UNDERSTOOD! This is FUN!!!!
He stayed out as long as he was permitted. We went to at least 30 houses. Every house, he said his line. Everyone gave him some candy in his bucket (which had to be emptied into Rachel's bucket a couple of times because there was no room since we didn't anticipate success). And he walked home holding Daddy's hand. He had a GREAT time.
What a change in 365 days!!!!!
But we had been preparing for Halloween for a while. Daniel has wanted to be "Darth Vader" for MONTHS. This desire was so strong, I went and ordered his costume before school started so I could be sure that he got the costume that he wanted. I found one (amazingly) on sale and he was very happy with the results. But he's the easy one. As a typical kid who is really into Star Wars, he likes the idea of playing this character. He will act out all of the light saber scenes when watching the movies and he is now watching Clone Wars on DVD as we are working to get him caught up. To him, it's all fun and a great chance to play dress-up without fear of what it may look like to others.
Rachel was also relatively easy. Over the last few months, she has discovered the game of "dress-up". She has enjoyed putting on her princess dresses and her Tinkerbell costume which she has had for a couple of years. She likes to wear her "Fairy Wings" and more than anything, she wanted a tiara. So, for Halloween this year, I bought her a princess costume, with a tiara. She loves it and just ate it all up.
But Simon......that's the hard one. He doesn't like things that alter his perception of reality. He doesn't like things that are out of the ordinary. He likes things to be predictable. He wants things to stay just the same day in and day out. He's like Knit-Knots from the first season of Imagination Movers on Disney Junior -- boring and predictable. That's how he likes it. Halloween is anything but. Last year, he really showed us how much he despised the holiday. He didn't want to get into his costume (cowboy). Trick-or-treating was not thought of as a fun activity. He was the concern.
This year I selected his costume very carefully. I made sure his costume was one that would easily fit over his clothes so he wouldn't have any problems with the way the costume felt against his skin. I made sure that there was no hat required or no mask. And I found one that really seemed to suit him -- Mater, from the movie Cars. He really doesn't care for the movie, but he does enjoy the shorts "Mater's Tall Tales". Every time he sees Mater, he immediately will shout, "If I'm lyin', I'm cryin'!!!". (it really is very cute) So, I purchased the costume and crossed my fingers.
With Simon, we have learned that sometimes if you prepare him, it will backfire. It seems to tell him that this is something to be afraid of. Sometimes, if you allow something to sneak up on him, it seems to come out better. The hard part is determining which circumstances require the preparation and which should you just allow to happen. This time, we decided to just allow Halloween to come up and see if it went better.
So, on Halloween morning, Simon went to school. The other 2 were home because of a school holiday (since Simon's school is TECHNICALLY outside of the public school system, he has a different schedule than the other two). He went to school with his costume attached to his backpack and we were going to come visit for the party and we'd see how it was going. When we arrived about 1.5 hours later, he had just gotten into his costume and he wasn't quite sure what to make of it all. But he wasn't fighting anyone. When we arrived, Rachel and Daniel were both in costume (Daniel minus the helmet) and I think he liked what he was seeing. All of a sudden he was more willing to participate. We all went on a small Halloween parade around the school and went trick or treating in the various classrooms/office. He was really having some fun. He stayed in his costume until shortly before the 3 of us left and we took the costume home with us.
That night, I hoped to be building on that success. Last year, Simon didn't want to get into the costume and he DEFINITELY didn't want to leave the house to go trick-or-treating. But this year, putting the costume on was reasonably easy. He was fighting a little bit, but in a playful way. We found a small bucket for him, anticipating that he would only visit a few houses, and the 5 of us set out to go Trick-or-Treating.
We went to the first house and rang the doorbell. After the door was answered Daniel immediately said "Trick-or-Treat!!!" (he was going to do a Darth Vader thing, but the excitement of the night took over -- he's only 6 after all). Then it was Rachel's and Simon's turn. Rachel said it and then tried to go into the house (which became her pattern everywhere we went). Simon said, at the top of his lungs, "TRICK-OR-TREAT!!!!". Then he was given candy in his bucket. He SMILED! He UNDERSTOOD! This is FUN!!!!
He stayed out as long as he was permitted. We went to at least 30 houses. Every house, he said his line. Everyone gave him some candy in his bucket (which had to be emptied into Rachel's bucket a couple of times because there was no room since we didn't anticipate success). And he walked home holding Daddy's hand. He had a GREAT time.
What a change in 365 days!!!!!
Thursday, November 3, 2011
More and More Things Are Happening
This post is COMPLETELY about me. I have dropped one activity to pick up another (with a bigger time commitment) and feel absolutely rejuvenated!!!! And then I'm preparing for Simon's IEP Meeting next week. And we are experiencing one breakthrough (and breakdown) after another. My head feels like it's about to explode!!!!
First of all, I made the difficult decision to resign from the Executive Board of my local chapter of MOMS Club International. It is such a good group and they have helped me in so many ways that I felt I needed to repay them, so I joined the board about 18 months ago. But my kids no longer do anything with the group. They are all in school full time and the organization really is designed for Stay-at-Home-Moms with kids who are home with them. Yes, there are parent-only events and yes, there are events (again for parents [usually] in the evenings, but our bedtime routine is so strict that I haven't been taking advantage of these. I am not contributing and was standing in the way of people who could help. So, I decided to step down. I will continue to stay active with them until my membership expires (relatively) early next year at which time I will make the decision of whether I should drop it all together. At this point, I have to say I'm thinking of doing just that.
But almost as soon as I decided to drop the board position, something came along that I had to jump at. A friend whom I met through Facebook is looking to do a regular webcast about parenting individuals with autism. We may have had a hard time getting together to really discuss it, but we have had a couple of brief meetings over the last few days and are really going to make this happen. We are planning on doing a "dry run" this weekend to see if we have the technical side of this under control. Once we do this, these broadcasts will be available on YouTube. Who knows how many will see this and how many people we can potentially help? I'm so happy that she's such a "go-getter" otherwise this would never get off the ground. She had a plan long before she reached out to me and is ready to run with it all. I'm really looking forward to this, even though I know this is going to take a significant amount of time.
Then there's everything else that's been happening. I continue to be active in the PTA for Daniel's school. I enjoy working with them and really think I'm doing some good. It's not too much of a time commitment, but it's definitely there. Thus far, I've been able to dedicate a particular day for "PTA Volunteer Stuff" and been getting it done. I really think that'll be fine, but I just started another part of this job that I need to organize. Again, once I do, I think my 1-day-a-week thing will work just fine, but I have to do just that.
And, to top it all off, Simon's IEP Meeting is coming up on November 10. He is where we have so many questions. I now know that we aren't going to be discussing his placement for next year (now that I've had that discussion with Rachel's team), but I still need to make sure that the goals that we write and develop will help facilitate his placement into the typical elementary school located down the street from our house. I know he isn't going to be ready for a typical classroom. I know he's not even close right now. But I do want him in this building. I do want him working with this particular teacher in kindergarten, just like Rachel. I think they will do better there than in the other programs, based on the little I know of them. And I want them together (yes, this part is selfish). I want to no longer have to deal with the Transportation Office. I want them in their "home school".
So, now that my head is about ready to explode, I'm going to head upstairs and break up about 20 Lego projects in Daniel's room so he can start them all over again and this will allow me to access his closet. Yes, when my head is ready to explode, I feel the need to make other things explode, and Lego projects will suffice today.
First of all, I made the difficult decision to resign from the Executive Board of my local chapter of MOMS Club International. It is such a good group and they have helped me in so many ways that I felt I needed to repay them, so I joined the board about 18 months ago. But my kids no longer do anything with the group. They are all in school full time and the organization really is designed for Stay-at-Home-Moms with kids who are home with them. Yes, there are parent-only events and yes, there are events (again for parents [usually] in the evenings, but our bedtime routine is so strict that I haven't been taking advantage of these. I am not contributing and was standing in the way of people who could help. So, I decided to step down. I will continue to stay active with them until my membership expires (relatively) early next year at which time I will make the decision of whether I should drop it all together. At this point, I have to say I'm thinking of doing just that.
But almost as soon as I decided to drop the board position, something came along that I had to jump at. A friend whom I met through Facebook is looking to do a regular webcast about parenting individuals with autism. We may have had a hard time getting together to really discuss it, but we have had a couple of brief meetings over the last few days and are really going to make this happen. We are planning on doing a "dry run" this weekend to see if we have the technical side of this under control. Once we do this, these broadcasts will be available on YouTube. Who knows how many will see this and how many people we can potentially help? I'm so happy that she's such a "go-getter" otherwise this would never get off the ground. She had a plan long before she reached out to me and is ready to run with it all. I'm really looking forward to this, even though I know this is going to take a significant amount of time.
Then there's everything else that's been happening. I continue to be active in the PTA for Daniel's school. I enjoy working with them and really think I'm doing some good. It's not too much of a time commitment, but it's definitely there. Thus far, I've been able to dedicate a particular day for "PTA Volunteer Stuff" and been getting it done. I really think that'll be fine, but I just started another part of this job that I need to organize. Again, once I do, I think my 1-day-a-week thing will work just fine, but I have to do just that.
And, to top it all off, Simon's IEP Meeting is coming up on November 10. He is where we have so many questions. I now know that we aren't going to be discussing his placement for next year (now that I've had that discussion with Rachel's team), but I still need to make sure that the goals that we write and develop will help facilitate his placement into the typical elementary school located down the street from our house. I know he isn't going to be ready for a typical classroom. I know he's not even close right now. But I do want him in this building. I do want him working with this particular teacher in kindergarten, just like Rachel. I think they will do better there than in the other programs, based on the little I know of them. And I want them together (yes, this part is selfish). I want to no longer have to deal with the Transportation Office. I want them in their "home school".
So, now that my head is about ready to explode, I'm going to head upstairs and break up about 20 Lego projects in Daniel's room so he can start them all over again and this will allow me to access his closet. Yes, when my head is ready to explode, I feel the need to make other things explode, and Lego projects will suffice today.
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