Saturday, December 24, 2011

A Call To Action!

On December 14, a young boy (9 years old) in Mercer County, KY was forced by his teachers into a duffel bag and the drawstring pulled tight for upwards of 20 minutes before his mother found him, in the bag, in the hallway outside his classroom. This young boy happens to be autistic and this was being used as a form of discipline because he was misbehaving in the classroom.

I know....I'm the parent of 2 autistic children, and my attention is often drawn to stories like this. But I don't care he was autistic -- this is NOT an appropriate way to treat a 9 year old student in a public school, much less when the action is performed by a TEACHER. According to the article on Yahoo! News (, the official statement that was provided by the interim Superintendent of Schools included, "The employees of the Mercer County Public Schools are qualified professionals who treat students with respect and dignity while providing a safe and nurturing learning environment."

Christopher Baker was NOT treated with respect nor dignity. Nor was there a safe and nurturing learning environment present in that classroom if this is how their students are treated.

If you agree with me and feel that this cannot be allowed to continue in an American Public School, please consider signing the online petition on (

Thank you.

Wednesday, December 14, 2011

Visiting Santa

This past weekend, Dad and I took these kids on the annual Santa trip. We are never sure what to expect from those moments -- will they be willing to wait on line? Will they try to run away? What will they think when they are face to face with the big guy? But we can't be afraid to do things that everyone else just takes for granted, right?

That's always our question. We know that there are opportunities, but we have to decide whether it's worth the risk every time. Sometimes, because of Big Brother, there really is no question -- he wants to go and he deserves to go. We just try to prepare ourselves for whatever Ballerina and Music Man will do. This is one of those times. Big Brother believes in Santa. And he knows he wants certain specific packages to be waiting for him under the tree. If he doesn't tell Santa himself (or at a minimum one of Santa's authorized helpers/dopplegangers) he has no way to know if Santa will get the message. So, off to Santa we went.

I also should say that visiting Santa is a measure for us as parents. We go to the same location every year. They are set up (about) the same way every year. And every year, we try to ascertain how Ballerina and Music Man are progressing, and how we as parents are growing in our willingness to take chances with our kids to give them these experiences. We always purchase the images (and the copyright protection) so we can track these experiences over time.

So, this year, we went on Sunday. We checked online and learned that the mall was opening at 10 and Santa would be arriving at 11. So, we knew we wanted to arrive at the mall around 10:30. That way we would be near the front of the line, at least hopefully. So, we made an effort to have everything we would possibly need and then headed off to the mall.

We got there a little later than we planned, mainly because we got a slightly later start then we planned. But we were still only the 4th or 5th family on line. As soon as Dad joined the line with the boys, out came his phone. Big Brother took out his iPod. Big Brother started playing his games. And Dad started a movie -- PARTY DAY by Laurie Berkner Band.

Uploaded from the Photobucket iPhone App

These kids were dancing, playing, singing and having a blast. We had to work to keep them from getting in the way of the shoppers walking around the growing line to see Santa, but they just kept working their way to a darkened store window which had a reflective surface. Ballerina enjoyed staring at her reflection, Music Man was dancing and spinning away and even Big Brother joined in!!!!

Uploaded from the Photobucket iPhone App Uploaded from the Photobucket iPhone App Uploaded from the Photobucket iPhone App Uploaded from the Photobucket iPhone App

The video kept them busy until Santa arrived. Then, since we were so close to the beginning of the line, we moved right into the queue when the gate was opened. We still had a couple of songs left in the movie to pull out when we were waiting for our actual turn, but all together, our wait to see Santa was only about 35 minutes, and that was with us arriving approximately 20 minutes before Santa arrived. Big Brother was happy when it was our turn and then when it was our turn, he went straight onto Santa's lap and they discussed his list. Santa asked to keep the list, just to make sure he didn't forget anything. And, for good measure, we even got a couple of pictures for our efforts.

Uploaded from the Photobucket iPhone App Uploaded from the Photobucket iPhone App

After we left Santa's lap, we had a few problems. Neither Ballerina nor Music Man wanted to stick around and wait while I paid for the picture. Dad was stuck trying to coral them. Music Man DID manage to get out of the space that Dad created and went into a store. But unlike past experiences, once he reached the back of the store, he turned around and came back to me and took my hand to walk right back to Dad. In the past, he would have been kicking or screaming, or I would have had to go into the store and drag him out, carrying him like a stack of potatoes. So, again, using this as a measure of growth, this was a positive.

So, we drove home, tired but triumphant.

But Ballerina's day wasn't done. She was so happy to be dressed up. I couldn't allow her to stay in that dress all day when she was just playing at home, but I allowed her to be in her Halloween costume. So, Ballerina was a princess for the rest of the day, tiara and all....

Uploaded from the Photobucket iPhone App

All in all, it was a good day!!!!

Saturday, December 10, 2011


I am feeling so vindicated right now.....Ballerina's dance class started on October 1. We started planning it several weeks before. But I was at a loss where to go to promote it. I knew that the class was meeting an "unmet need". I knew that people would be interested, if only they knew it existed. But I'm not a promoter. I don't know how to spread the word. I just tried to figure that out. Just trying to get the word out in my small circle.

That was until a couple of weeks ago when I wrote my panicked blog post. I was terrified that this class would be cancelled, after all that effort. I was afraid that it would be taken away from my little Ballerina -- her all-time favorite activity. I just couldn't let that happen. I became a woman possessed. It was my MISSION to make sure this program succeeded. I went to day care centers to drop off flyers. I posted on every Facebook page I could think of. I wrote a blog post here. I contacted a couple of local papers, including the Germantown Patch, and wrote my own article there (became one of their regular bloggers for the effort). I also contacted another blogger who happens to run a website listing all things autism in our area.

These efforts paid off. Today's dance class was not only my little Ballerina, but there were 4 little girls, all wanting to dance. All wanting this opportunity but these families had previously been unable to find anything suitable for their daughters. The class went smoothly. They all had such fun! I got to observe the last 1/3 of the class, and it was such a pleasure.

I felt like a hero. I made this happen. I let these families know this program exists. And now they can have the same pleasure I get every week watching Ballerina get ready for her dance class and for the euphoria she enjoys for the rest of every Saturday.

How often does an Autism Mom say that they feel like a hero?

Wednesday, December 7, 2011

It's Official....I'm a Crazy Person

The last week has been nothing but insanity. Between my (successful) efforts (thank you very much) at getting word out about this dance class, Ballerina's IEP Meeting (which was a really simple thing of just getting us in the same room at the same time), and our normal craziness, I'm amazed I am able to sit at the computer to write this much less admit to the world that I'm officially crazy.

But it's true.

Ballerina's meeting yesterday was about as simple as can be. It really was just her team and I in the room discussing what evaluations they feel are required in order to present an accurate picture and to aid our decision as to which kindergarten program is best suited for her needs. The last evaluations in her file are from Summer 2009 and the report from CSAAC (the organization who conducted the in-home ABA while we were with MCITP [our school's Early Intervention program]), and they no longer paint an accurate picture of what she is doing. Most of these indicate that she was barely verbal and nearly 100% uncooperative. Anyone who sees her now knows that these phrases do not describe my daughter. So, I agreed for them to start evaluating her again. She will be seen by the school psychologists, her classroom teacher and I will fill out various reports, and she will receive both a Speech and OT screening (the latter will be using non-standardized and more informal assessments as they don't feel that the "formal" testing is appropriate at this time). The school has 90 days to complete these assessments. Then we'll sit down again for what I'm thinking of as "The Big Meeting" -- we'll go over the evaluations and determine kindergarten placement at that time.

So, when I receive (haven't as yet) a request for an IEP Meeting for Music Man to take place in January, this is what I should be expecting (they've already told me that they plan to hold such a meeting to get updated assessments for him as well). I swear, this transition to kindergarten is going to drive me crazy. I'm almost to the point of saying, "JUST TELL ME WHERE THEY ARE GOING ALREADY!!!" Because, as I'm sure you know, I'm just SLIGHTLY on edge about this whole process....

But there is some positive news to report.....more follow-up to the dance class.....not only is that student that I mentioned earlier considering joining the class, but someone else has ACTUALLY REGISTERED!!!!!!!! So, we may have 3 active students in this class within a couple of weeks!!! This was the minimum that the studio owner told me that she wanted to see. I know the class wouldn't have been cancelled (now), but it would be nice to know that it's CLEARLY safe.

So, now I'm trying to get my head back on. I'm trying to figure out exactly what is going on so I can focus. Time to breathe and get ready for the next stage, whatever that may be.....

Monday, December 5, 2011


I know.....I often say that....there are just several days every once in a while where it feels like it's all happening at once, and right now we're at one of those points. Nothing bad. Nothing catastrophic. Nothing life-altering. Just a lot.

Let's start with a follow-up to my last post. Since I wrote that, I have contacted several local newsletters and had stories published in several. Also, our local paper has been contacted and I hope they will consider writing a story about this dance program. I spent Thursday morning driving from one day care center to another, dropping off flyers for this dance class. I started writing as a blogger for The Germantown Patch, mainly to start getting this story out. I posted on every Facebook page I could think of that may help me reach my audience. And to date, it looks like it wasn't all in vain -- it looks like we may have another child signing up for this class. The Mom wants to check it out a bit first (and who can blame her), but I'm hopeful. And I learned over the weekend that the owner will NOT cancel this class, at least during this time that it's offered. The class has started, she has a loyal student who is enjoying and thriving in the class -- it won't be taken away from her. So, my true desperation has been relieved. But, at the same time, I really worked hard to get something like this started and I want to prove that it isn't just me -- I want this to be a success for children in addition to my Ballerina.

But this week is starting with a bang. Back in early October, I took Music Man to the dentist. The visit was reasonably successful (given my expectations), but we decided he needed more exposure than the every 6 months that is typical for kids' dental visits. So, this morning, I took him back there. It had been 2 months and in that time, he had gotten much better about brushing his teeth. He will now at least tolerate the brush and actually seems to enjoy the sensation for brief periods of time. But how would that translate to going to see the dentist? Well, the answer was "reasonably well". Once again, for most parents it would be a failure. He cried and screamed and kicked through the full exam. But he didn't attempt to bite the dentist. He allowed the mirror and the poker to be in his mouth for brief periods of time. And he didn't attempt to run away.

But the amazing thing was, after this, he asked me if he could get a haircut. He actually pulled at his hair and said "Haircut". Well, how can I NOT bring him to get a haircut (which was at least 6 weeks overdue) after he asks for it. This is another one of those "don't do it unless it's necessary" kind of activities. He hates it. And there is nothing I can say or do that will change that. But today, I picked him up from school (after dropping him off late to take him to the dentist) so we could get his haircut. And he did it!!!! Once again, there was a lot of screaming and hands covering his ears, but he allowed her to get the whole thing!!!! And now he looks so grown up!!!!!

Uploaded from the Photobucket iPhone App

So, we got through today. Dentist and Haircut for my Music Man, and he handled it all like a champ!!!!

Tomorrow, Ballerina's IEP Meeting to, I think, begin the kindergarten transition. I THINK we're going to be discussing what evaluations are needed.....what programs they recommend......and what I need to do to make this happen. Stay tuned.....

Wednesday, November 30, 2011

I'm Just A Bit Panicky Right Now

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).

Uploaded from the Photobucket iPhone App

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.

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."

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.

Photobucket Photobucket Photobucket

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.


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.

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.

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!

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!!!!!!

Tuesday, November 8, 2011


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.

Sunday, November 6, 2011


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!!!!!


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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.

Friday, October 28, 2011

The last week (or so).....

I am finally taking some time to sit at the computer and write this post. So much has been happening these last couple of weeks, it's just hard to keep it all straight. And then, to top it all off, other things have been added on that makes it impossible to spend the time sitting at the computer to tell the stories. But more is happening so, I'm going to share the existing stories now.

First let's start with last Friday. The kids were off from school due to a state-wide education conference and we learned that the characters from the PBS Kids show "Super Why" were going to be paying a visit to meet their fans at our local Whole Foods Market. This is a current favorite around here so I planned to take them to the store. Then life happened. I threw out my back. On Thursday, while reaching into the dryer to pull out my favorite pair of jeans, I felt it just SNAP!!!!!! I dealt with it for the rest of the day, resting it whenever possible and REALLY bribing Simon into the car when it was time to get Daniel and his friend from school, but by Thursday night, I was in A LOT of pain. When I woke up in the morning (slept well, thanks to a very good pain-reliever), Kevin asked if he needed to stay home (he saw how I couldn't move the night before. I was feeling better so I was slow to answer him, but then as I tried to stand up, he didn't even wait for the answer. He just put on a pair of comfortable pants and stayed to help me.

By the afternoon, I was feeling better, and we figured we could find a cart for me to lean on, so we put the kids in the car and headed over to the market. We still hadn't told them of our plans in case we decided not to go through with it and when we got there, we noticed there was a line (but not a very long one). So we (well, Kevin) got the kids out of the car with the leashes on, and we took our place in line. We looked in the window and who did we see?? PRINCESS PRESTO!!!! This is probably Rachel's favorite character from the show (well, of the heroes that is). We wait on line and despite a few attempts to jump ahead several spots, they did quite well. And they got to meet the Princess.

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Then we took advantage and did a bit of shopping. We aren't at Whole Foods very often, even though we like many things that we can only find in that store. It's not particularly convenient and it is a little pricey (all right, you get what you pay for, but still it's not always in the budget). After we finish the shopping, the meet-n-greet character has changed and SUPER WHY is meeting with his fans. So, after making our purchase, we got on line and waited again. This time things didn't go quite as smoothy. Rachel and Simon were getting tired and just wanted to get in the store again or or the other. But eventually, it was our turn....

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When it was done my back was hurting again, but it was worth it. They were excited and happily went in the car talking about Princess Presto and Super Why!

The other thing that happened this week involves a slight change to our bedtime routine (and for you loyal readers, you KNOW that is a sacred thing in this house). Simon, lately, has been unhappy with our existing routine. He's only wanted ONE book, and he wants to be the one to read it. So, Kevin let him the other night (this video is about 6.5 minutes long, so your choice how much of it you want to watch)....

He did a really good job with it. Some of it was memorization (he knows this book from school) but much of it was reading. But one thing we did notice by doing this is how much he still "stims" -- it's not the repeating stims that he used to do....we've always seen the flapping but now we're seeing the smacking of the lips and licking his face. It's not a bad thing that we're seeing it, but it's amazing how Kevin's decision to record this reading really showed us about our son's progress.....the good and the bad....

So, I've now filled you in about some of the things that have been happening around here. There's still more to tell as things are, as I said earlier, EXPLODING all around me, but that's another story for another time.

Another chance to shine!!!!

I have a real post rumbling around in my head that I hope to publish VERY soon, but something came up this morning that I need to blog has been showcased in the Autism Blogs Directory. If you want to read the interview, please click on this link.

Thanks for all of your support and remember to keep on reading.....more interesting things are happening here every day.....I just need to find a moment to write them all down.....

Wednesday, October 19, 2011

What a week!

Last week has come to an end. And it took me 3 days to sit down at the computer to type out that sentence. It was full of so many different things.....there was a visit to the developmental pediatrician......there was an IEP birthday......Rachel's immunizations.......spending time with a friend going through a very rough time. And those were just the things outside the "normal" insanity that is my life sometimes.

But it was a good week. In many ways because of those added activities. I learned more about Rachel while spending time at the doctor's office. I learned that everything we have been doing for the last 2.5 years is paying off, despite not always being able to see that -- she is doing SO MUCH BETTER than when our journey began. The IEP meeting was successful -- we found the areas that need more work and shared in Rachel's accomplishments over the last year. The only thing about the meeting that I didn't like was the fact that her placement for kindergarten was not discussed as I was hoping. I know it's early in the year, but I was hoping for a preliminary placement decision, if nothing else to hold a spot for her in our desired classroom. (I took care of THAT on my own, in my own "subtle" way....)

And my 40th birthday did not go passed unnoticed. I may not be where I pictured myself to be when I was 20, or even 30, but I am in a good place. I love my family and I am watching them grow. I learn new things every day and am making something positive for myself out of what I thought just 2.5 years ago was the end of the world. When I took Rachel to our regular pediatrician's office to get her up-to-date on her vaccinations (which went as well as could be expected), I had a very brief conversation with the pediatrician as I handed her copies of my new business cards. She and I had a long conversation shortly after we learned we were an unwilling member of the autism world (in fact, she's the one who first used that phrase in front of me). I told her that if any of her patients were just learning of their entry into the autism world and wanted to talk to someone, she should feel free to use my name. I think I can really help people who are just starting on this road. I'm not sure about the rest of this, but I am living proof that life isn't over when an autism diagnosis is discovered.


And, as horrible as this is to say, I really came to appreciate my family. The friend I visited lost her husband recently and unexpectedly. I can't imagine what she and her family are going through right now and I greatly appreciate that I don't have to. But I can be a good friend to her and be there when-ever and if-ever she needs anything from me. And I hope she knows she can count on me to be right there for her.

Additionally we had our normal class, gymnastics and music class for Rachel and Simon. And I got to see my Tiger Scout sell popcorn outside of the local supermarket to raise money for his Pack. It's so hard for passers-by to say "No" to these young kids and he was just having so much fun hanging out with a couple of his friends.


So, I may have been on a quiet stint for the last week or so, but I've definitely been busy. No wonder I'm so tired these days.....

Tuesday, October 11, 2011

Happy Birthday to Me!!!

Today is my 40th birthday. And what a day it's been. A day of meetings. A day of activities. And a day of reflection.

It was a year ago today that I first announced I wanted to become a parent advocate. I still don't fully know or understand what that means, other than trying to help other parents find the best solutions for their children and help them achieve placements allowing them to get them into these programs. Well, I don't know how to do that, but I spent the year giving my advice to people who are trying to find solutions. And I hope I did it in such a way to give them the tools to help them find what they need. And MCASA (Montgomery County Autism Society of America) has allowed me to put the phrase "Parent Advocate" on my business cards based on the information I provided them with regards to my activities. So, I would say I have successfully achieved that goal. This is what I thought about when I found a few minutes today.

But that's not what today was about. Today was about being busy doing things for my kids. It was about being a Mom to 2 children with autism and their neurotypical very busy brother. It was about making sure that I was able to give them everything I could.

The day started with spending much of the morning in my Daniel's first grade classroom. I am typically there on Tuesday mornings, giving the teacher an extra pair of hands. The kids are engaged in independent learning and I help answer their questions or help them figure out how to do their assignments. It's quite fun and I look forward to seeing them progress as the year goes on. I spent most of my time today working with one child in the class and hope that he will benefit from that one-on-one work. And doing this had another benefit -- it gave me something to think about before heading over to what was worrying me most about the week. Rachel's IEP Meeting.

Because when I left Daniel's classroom, that's where I headed next. I ran home to let Domino run around the backyard and grabbed a quick lunch at home before heading over to Rachel's school (but of course made a quick stop at Starbucks for a Pumpkin Spice Latte on the way). And I arrived there about 10 minutes early. That's when the nerves really kicked in. I knew 4 areas that we needed to address......(1) OT (Occupational Therapy) -- she really is quite behind here and refuses to do any art projects with me including basic coloring and even when she DOES do this, it's rushed and her grip is more of a grasp rather than the pincher grasp that she needs to have. (2) Her behavior issues at home (specificially, her violent tendencies towards Daniel when Simon gets upset) even if this is difficult because they don't see this at school. (3) Her integration into pre-K. This has (temporarily) been put on hold, but there are 3 children that are doing this and they will be continuing to practice until the pre-K class is ready to resume for these kids. This is expected to resume on November 1. (4) Kindergarten placement.

Overall, I think we had some good answers for these questions. They didn't see as much of a problem as I did with the OT, but that's because Rachel is willing to do these things at school. They gave me some ideas how to get her more willing to do these tasks for me, and they did make sure that the OT goals were comprehensive. They also don't see the behavior issues I described, but they did listen and will try to incorporate some lessons to help her in these areas.

The only one of these 4 that I was disappointed with the results was the question of her kindergarten placement. I was hoping they were going to make a preliminary placement decision for her. I realize it's too early in the year to make a definite placement decision, but I'm concerned about there being space in the program I desire for her if we don't, for lack of a better way of phrasing it, reserve her spot for next year. They however, informed me that they will find room for her in the closest location for the program that she is assigned. I REALLY want to see her in our home school with opportunities for integration with typical classes and I really want her to be with this particular teacher. I need to figure out how to make sure that happens. Right now, I'm not sure how best to do that, or if I'm sitting here worried about nothing.

But I survived her IEP Meeting.

I even survived picking up the boys from their respective schools, even through a pretty significant Simon meltdown.

There's still one more parenting event left today.....taking Daniel to his nature walk with his Tiger Scout Den. He is looking forward to this, even though I'm not. And it went reasonably well....the kids all had fun and the walk was short and sweet (and a bit dark). They discussed what they saw and I just looked forward to getting home and having no more responsibility for the day.

So, tomorrow I can relax. Tomorrow I can sit back and enjoy coffee with a friend. Tomorrow I can celebrate. Today, I was what I always wanted to be....A BUSY Mom!!!!!! What better way to spend my 40th Birthday!!!!!

Monday, October 10, 2011

What IS a diagnosis anyway?!?

Yeah, that's what I was forced to contemplate today. I took Rachel to a developmental pediatrician for an evaluation. We made the appointment knowing that we had a co-diagnosis of "Autism" and "ADHD". I was resigned to that truth and really just trying to figure out what the best option really is to allow her to succeed. Should we continue the Focalin? Should we change that medication? Should we do something completely different?

We went to a different facility. The doctor we saw recently has retired. And since we're talking medications, I want her to see someone more local than Kennedy Krieger Institute (all right -- KKI isn't far, but it really is quite a haul), and it has been a while since we've been up to Baltimore. So we got a referral from someone we know and trust, and took Rachel to her office at Children's Hospital. This is the first time this doctor would be observing Rachel.

Overall, the appointment went quite well. We didn't give her the Focalin this morning so that she could be observed in her "natural" state. She ran off a few times, but always returned when called (and when she reached her desired destination -- she never wanted to lose sight of me). We had to wait a while, but thanks to the iPhone, we were able to have that time pass with minimal issues. I had that long talk with the doctor while Rachel (again) played on the phone. And then her examination of Rachel took place. The last time we did these, she was COMPLETELY uncooperative. Then again, the last time we did these was just after initiating in-home ABA 2 years ago. This time, she was far more compliant. She answered all of the doctor's questions to the best of her ability. And she was reasonably cooperative for the medical exam as well. Overall, she tested like a young 4-year old in most tasks (but not auditory memory).

And the results.....ADHD, yes. Autism (specifically "Autism Disorder"), NO!!!!!

She told me that she doesn't doubt that Rachel is on the spectrum, but she does not feel that Rachel has "Classic Autism" or "Severe Autism" as we have previously been told. I asked her if this was just because she progressed beyond that as she has learned and as we have learned to address her needs, and she really doesn't doubt that. We really were just starting out at that time and had just discovered things that worked. But Rachel wanted my approval of games she was playing on the phone. Rachel gave this stranger (the doctor we were seeing) eye contact. She wanted to SHARE her experiences with us. You DON'T see this in "Classic Autism".

So, over the next few months, I need to decide if I really want to know what her real diagnosis is. Does it really matter? ADHD is clear and present. That is the condition that requires medical intervention. And we know she is on the spectrum. That's the more important part. The rest really doesn't matter.

She's still just RACHEL!!!!!! (Really Aggravating but Charming and Happy who EVERYONE Loves)

Wednesday, October 5, 2011

Who's Afraid of the "Big Bad Dentist"?

Well, I AM for one. You're reading the writings of someone who has had 3 root canals in a single tooth this summer, is about to have more work done on that tooth at the end of the week and will need a crown put on once everything is fully resolved. I HATE going to the dentist. So, I don't expect my children to like it either.

That is especially true for Simon. Simon doesn't like anything new. His fight or flight response is strong and so is he. He doesn't like people to come near him with any instruments, including a toothbrush. But he has started losing his baby teeth. We need to have his remaining 19 teeth checked. And we need to get him used to it, even if it takes a while.

So, last week, Daniel went to see a local pediatric dentist, "Dr. Bob". Dr. Bob (in general) has a great reputation among many local families for all children, including children with special needs. When we were in the office for Daniel's appointment, I took several pictures and made a social story for the twins. I also spoke with Dr. Bob explaining Simon's issues and my concerns. I made sure that HE was prepared, even if I couldn't successfully prepare Simon.

But I worked on preparing Simon. I made that social story using a phone app called "Stories2Learn". And Simon LOVES that story. We read it over and over and over and ..... again. When I picked him up from school yesterday, we went into the school library and read it again. He thinks it's a great story. And it worked. From the moment we pulled into the parking lot, he knew we were there to see "Dr. Bob". Then we got out of the car. That's when reality set in.

He seemed to instinctively know that we were going to have to go to the second floor. He kept screaming "No elevator!!!!", with his hand covering his ears. I kept reassuring him that we didn't have to take the elevator if he didn't want to -- we could walk up the stairs. Unfortunately, the stairs are right near the elevator. But no body drops -- just loud insistence that we not get on the elevator. But we went up the stairs and walked around to the dentist's office. It was still closed for lunch.

We took advantage of the extra time and walked around. We looked down at an exercise room and saw the people on the treadmills, exercise bikes, stair machines, and all sorts of exercise equipment (most of the building is a health club). Then when the office opened, we went into the waiting room and he was face-to-face with the pictures he saw in the book. He saw the books. He saw the fish. He saw Mr. Potato Head. And he got to meet Dr. Bob. Things are going well!

We walk down the hall so Dr. Bob can look at his teeth. This is what I'm afraid of. This is where Simon typically falls apart when we visit the pediatrician. But he seems to be doing well. Until we get to the end of the hall. He drops to the floor and starts to cry (note, I say cry, not scream). He has no intention of getting into the examination chair or letting Dr. Bob come near him with those instruments. But while talking to him, he is willing to come sit on my lap, facing me. We play a short tipping game and before he knows it, his head is in Dr. Bob's lap. Simon is not happy about this, and is squirming as much as he can. But Dr. Bob is able to count his teeth, check the general condition, and confirm that he does have a few more teeth that are starting to get loose. And he confirmed that there are no cavities.

No cleaning. No x-rays. After a VERY brief attempt to scrape the tarter off with a pick (unsuccessfully), that task was done.

This was most definitely a first visit. We are going back in a couple of months and will probably continue to do so for a while so that Simon can become more comfortable with the idea. And hopefully he will allow Dr. Bob to do a little bit more. But given the nightmare I was expecting, this was simply an unpleasant experience. A success.

Baby steps......

Saturday, October 1, 2011

Today Was The Day

For about 2 years, I have been trying to get Rachel in a dance class. I have tried in her gym (which offers dance). I tried in several other private studios. I tried at performing arts centers. But I have had no luck. I tried calling these studios. No one would call me back. I tried to figure out ways to include her in what I was sure would be her favorite activity. But everything I tried didn't work. That is until about a month ago, when I asked my neighbor (who happens to be a dance instructor) for her recommendation.

At the time, I didn't realize that she was just opening a dance studio. And she didn't realize that I had been trying to do this for this long. She didn't intend to do this, but the day or two before that conversation, she had hired a dance teacher who had experience working with special needs children. That afternoon, we hatched a plan. And today, it became a reality.


A Special Needs dance class at The Studio of Dance is now a reality. Currently there are only two students enrolled, and we are all working to spread the word. But today, Rachel got up early this morning and dressed in her leotard with the ballerina skirt and she went to a dance class that was designed with her in mind. This class will teach her ballet and tap. And she may or may not excel. But she will have fun. And she will learn to do things correctly so that she doesn't hurt herself. But she can be the "Ballerina". She can embrace this strong desire she has had for as long as I can remember to DANCE and develop a true appreciation for the art form.

Movement comes naturally to Rachel. She loves gymnastics. She loves to stand on her head. She loves to move her arms. She loves to glide across the floor. She loves to move to the music.

I was so worried about this class. I was worried that after fighting so hard to find something for her she wouldn't like it. That she would be so rebellious that there was nothing they could do to help her. She was perfectly fine going into the studio and playing, running around and just having fun. But when the class started, these fears were sort of realized -- she was crying and really fighting. She opened the door and ran out of the studio. I brought her back into the studio and sat on the floor near the door. I had my camera (that was muted of course) and watched her for 5 minutes. I took a few pictures. I watched her teacher working with the two girls. I saw her start to relax. I saw her posing for the mirror. I saw her starting to have fun. And after a few minutes, I left her to the care of the dance instructor and slyly disappeared from the studio.

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When we got home, she continued to dance for the rest of the day. She was moving her arms with grace and beauty. She was watching her skirt flow behind her as she ran around. She proved to me that she is definitely my ballerina.

I did good. And so did The Studio Of Dance. Thanks to them for giving my perfect daughter, who happens to have autism and ADHD, a chance to do what all little girls should have the opportunity to try. A chance to DANCE!!!!!!!!

Thursday, September 29, 2011

Sleepless Nights

Have you ever just been unable to sleep? Not fall asleep -- but sleep through the night? That's been where I've been for quite a while now. I fall asleep quickly but am awake starting around 3 or 3:30 and I'm lucky if I ever fall back to sleep. And it definitely takes a toll. My patience is reduced, my temper rises and I just feel lousy.

Last night I couldn't stop my mind from racing. I was thinking ahead to upcoming IEP meetings. I was thinking about Rachel returning to pre-K soon. I was thinking about a conversation I had before heading upstairs to bed. I was thinking about Daniel needing to finish his homework by the end of the week. I was thinking about Rachel's upcoming dance class. I was thinking about that past moment in Simon's music class. I was thinking about, well, I don't know what else....

There is just so much stuff going on right now. Rachel is heading back to pre-K on Monday. We will see whether the ADHD really was at the core of the problems she was having last year or if that really was not what was causing her failure to succeed. So many things are based on that fact. We are assuming that medicating the ADHD will solve that problem for her. We are counting on it. She will be going to a new developmental pediatrician on October 10 and we plan to go to this appointment armed with some data regarding her school performance. If we can compare where she was before and after the medication was introduced we can make a determination if we are doing the right thing and then work out some of the specifics. But we need that answer soon because her IEP Meeting is on October 11. We will be making a preliminary decision about her kindergarten placement at that time. That is MAJOR! All right -- in the grand scheme of things, it's probably not THAT big, but sitting here right here right now, that's what we've been working towards for 2.5 years.

Then there's Simon's teeth. He lost his tooth last week. I looked over during dinner and saw a space between his teeth. More than a space. A gap.


Yup.....he'll be 5 on January 12 and he has lost his first tooth. It looks like it came out cleanly with no sign of blood which means that it has been loose for some time. I saw something strange with this tooth a few days before, but since I know he grinds his teeth (much to my chagrin), I thought that he had ground his teeth so far that it actually affected the tooth's size. But how could I have NOT noticed this?!?!?! He has his first appointment with the dentist next Tuesday. That is going to be an interesting experience considering he won't even allow me to brush his teeth and he won't open his mouth for anyone. I'm creating a social story for him which will hopefully help to prepare him, and we're going to a dentist who has been trained in working with autistic children and their office has been informed of Simon's issues and sensitivities. But still, I'm TERRIFIED of what is going to happen on Tuesday.

Then we have Simon's IEP Meeting which is still to be scheduled. I have spoken to his teachers about my goals for his kindergarten placement and they are working with him to make it happen, but they warned me before the start of school that I am expecting an awful lot from him. Is it reasonable? But we're trying and I would like to think we are going to make it.

What is most frustrating is that I can fall asleep quickly enough. In fact, it rarely takes me more than 10 minutes to fall asleep once the lights are out and I've had a moment to settle into bed. You would think that these things would prevent me from FALLING asleep. But no....I get that initial sleep and then I wake up to think of all these things.....

I think I need to get more sleep....

Tuesday, September 27, 2011

Making Dreams Come True

Yup....we're less than a week away from Rachel starting her Dance Lessons at The Studio of Dance. We are all so excited. I'm excited FOR her. And I'm patting myself on the back asking our neighbor seeking a recommendation for a dance class for her which is where this started. We don't know, like everything else, how this is going to go. But based on her apparent interest, I think she is going to LOVE this. I think that she's going to be entranced with the mirror and the barre. I think she's going to love making noises with her feet wearing the taps on her shoes. I think she's going to give this teacher a run for her money. But I also think she'll learn quite a bit.

Score one victory for Mommy!!!!!

I'm calling this my first success in my role as a Parent Advocate. Yup. I spoke with our local office of the Autism Society (MCASA) and asked if they had a problem with me calling myself a "Parent Advocate" since I really have no academic training -- just on the job experience with regards to my own children. They asked what I had been doing in that role and I described my Facebook page and this blog. I also told this individual about my responses on other Facebook pages, Circle of Moms and other websites. I also told him that if anyone asked me a question, no matter where, I would do my best to help them find an answer or give them an uplifting word. If I didn't have that, I listen and try to help provide a different perspective so that the person I was speaking to could perhaps think of things from that point of view. I don't know how many people that has helped, but I do try.

And he told me that, as long as I made it VERY clear if someone was to ask for my "professional advice" that I have ZERO legal training (which is implied with the term "Advocate"), I could call myself a "Parent Advocate". I do know where to look for information, but I cannot claim to have this knowledge. I am a parent of two autistic individuals. I advocate for them. I learn what I can to be sure to give them the highest likelihood of success in school and beyond. And I do my best. He told me that he would put my name and contact information on the list of parents who are willing to talk to those who just learn of an autism diagnosis reaching out for help and advice. That, alone, is something I consider an honor. He also told me about ways I can get more involved in their organization, things I plan for myself for the next several years. Unfortunately, right now that's not an option because all of the meetings are very inconvenient for our schedules, but they are not likely to change and our schedules will likely change as my children grow and change. By the time they are all school age, I may find myself more available for a more involved position within MCASA.

This summer, Kevin heard me talking to a stranger in a park near my in-laws' house who was coping with a recent autism diagnosis in her son. I was referring this person to a couple of Facebook pages (including my own) to give them a place to go to ask questions or get information. I also mentioned this blog. I don't know if this person ever took me up on my suggestions, but I made it available. He suggested that if I had business cards, it would make the transfer of this information so much easier. So, when we returned visiting family this summer, I went to VistaPrint to learn about creating business cards. I started playing around with the templates that were available for free to cheap cards. And I found a design that I really liked. It has 3 owls (like my 3 kiddos) sitting on a branch. And I added the text but decided I needed a title. That's when I contacted MCASA and got their permission to use this title.

These business cards are due to arrive in the mail today. I am very excited to see them on paper -- I've been seeing the computer image for a few weeks now. So, the career that I began to consider for myself nearly a year ago is starting to come true. I don't know how lucrative it will be, but that's not really the point. It's about helping people get through these first few years (this will expand as I learn more, I'm sure). It's about pushing for changes and education in the general population. It's about making a better world for my children and others who share their diagnosis and their family of diagnosis. It's about making my mark on the world for my children.

I'm feeling pretty good about myself right about now.

Tuesday, September 20, 2011

Matchmaker Matchmaker Make Me a Match.....

....that's what I feel like right now. I just came back from volunteering in Daniel's classroom and found it an AMAZING experience. Last year I went with the kids to the computer lab where they played games and learned the basics of using a computer. This year I'm working in the classroom, filling in as needed while the teacher is working with the kids in small groups.

I know a few of the kids from last year. And they're a good group of kids. And now I REALLY get to see what is happening in the classroom. I see the independent and cooperative learning that they are doing and still spending the time with the teacher. There were some minor issues for Daniel with me being there (his need to show off, for example), but those will diminish as he gets used to me being there (he's only in first grade, after all). I really had a lot of fun and I am looking forward to coming back next Tuesday to do it again!

But I saw something specific in the classroom today that made me take notice. There is a little boy in the class who sits near Daniel. He's very sweet and well mannered (his chair accidentally tripped Daniel [who wasn't looking where he was going] and he IMMEDIATLY apologized). I was walking around helping people on whatever they were working on and I noticed this child was talking to me but wouldn't look me in the eye. Other little things throughout our conversation made me think that he was on the spectrum, but I can't ask the teacher, nor can the teacher tell me if this were the case. But I strongly suspect.....

Anyway, this boy was telling me about some of his favorite things. Star Wars and Legos top the list. Now, who does this sound like to you? DANIEL!!!!!!! He is OBSESSED with these things!!!!! These two boys would have a BLAST having a play date together. And, if my suspicion is right and this child IS on the spectrum, I would love for him to have a friend that would understand. Daniel cares very much for two children on the spectrum in his brother and sister, even though I don't think he would admit it to many people other than his family. It would help teach Daniel to be more patient and teach him some of the struggles that those on the spectrum experience every day. And it would give this other child, if nothing else, a friend.

And it would potentially give me a new friend/contact/kindred spirit. Autism Moms are often friends, not necessarily because we are the people who we would naturally seek out, but because we have something very personal in common and we share this bond that we never asked for. We learn from each other. We share knowledge more than most other groups I am aware of, because we don't want others to go thru the struggles that we have already dealt with. We want to see those around us continue to move forward rather than backwards.

I still want Daniel to be friends with this boy, regardless of whether he has ASD or not -- as I said, he's a VERY nice boy with many similar interests to Daniel and I think they would have a great friendship.

Gee, I feel like such a matchmaker.

Saturday, September 17, 2011

Part 2

Well, today was Simon's next music class. I spent most of this week working up a good mad, starting on Monday. Yes, Simon had a meltdown. But it was a mild one. And there was a cause. He had gotten hurt. He was in pain. Any 4.5 year old reacts when they feel pain. Some have learned to express themselves appropriately, others are still working on that skill. Simon is definitely in that latter group. With a lot of effort, we have been able to teach him how to tell us when he's hungry, thirsty, feeling discomfort.....but pain and illness are difficult for him. When we pair this with all the other things that were happening in his music class last week, who could blame him, autism or not, for coming apart?

Apparently, parents in his music class can blame him. Well, at least 2 parents -- as far as I know everyone else was all right with his behavior in class last week. But I spent all week thinking about what I was going to do when I walked into that room this afternoon. How I was going to "show them" how wonderful my very talented and gifted child really is (and I KNOW he is musically gifted -- that's not just "Mom" talking). I knew I had to explain Simon without being too demeaning. I knew I had to recognize that many people in this world are completely ignorant when it comes to dealing with disabilities. Heck, I was just 2.5 years ago before I was finding myself directly coping with this day in and day out. But I was still furious. I WANTED those parents to pay for what they put me through this week. I WANTED to make them feel small and petty. I WANTED them to squirm in their seats when I walked proudly into the class with my beautiful son!

All week I thought about what I was going to say. This morning, I took my mental script and did my checkdown making sure that all the high points were included. I went to the Facebook page that I am the administrator for (We Care About Someone With Autism) and made my question of the day reflect what I was about to face, making sure there were no areas that I had forgotten about. I knew I was only going to have 2-3 minutes at most to make this impression and I wanted to be the best possible advocate for my son.

So, shortly before 3:00, I walk into Simon's music classroom proud and ready to go. I know what I'm going to say. I go to the back of the room to set us up at a piano back there and Simon selects his preferred seat. We pull out the books and I continue to practice the homework assignments, making sure others can see how gifted he really is. We are singing the songs. He is clapping the rhythms. He's laughing his contagious laugh because he is having FUN. And he is proving that THIS is where he belongs. Then the teacher comes in. I stand up and ask her if I can have the floor for a moment, and she allows me to have my say.

Then I revert from a confident Mom defending her child, to a woman begging others for her son's acceptance.

All the facts and stories I had prepared to say.....gone. All I could do was introduce us, and say Simon has autism. Instead of advocating for him, I spend my time defending him. A part of me spent those 2 minutes I was talking just scolding me -- YOU KNOW WHAT YOU NEED TO SAY!!! But I didn't know who had called to complain. I didn't know if that parent was in the room. I didn't want to make things worse for him or for myself. I just chickened out.

Class went on and Simon did well. He did everything that was asked of him and excelled. He listened to the teacher and proved once again his aptitude for music. He was one of the better behaved children in the class. I spoke to his teacher at the end of class and she pointed out that she also recognized the difference between this week and last week. He made me a VERY proud Momma and proved to me that he deserves better than I gave him today.