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 (http://news.yahoo.com/school-accused-putting-autistic-student-bag-182229844.html), 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 change.org (http://www.change.org/petitions/end-abuse-of-autistic-students-in-mercer-county-kentucky).

Thank you.

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.



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!!!!



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.



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....



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

Success!!!!!

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?

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.....

Overwhelmed

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!!!!!



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.....

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).



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.

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."