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.

Photobucket Photobucket Photobucket Photobucket

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....

Photobucket Photobucket Photobucket Photobucket

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.

Photobucket Photobucket Photobucket Photobucket

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!!!!!!!!