Wednesday, July 27, 2011

Interim Reports

When I was in high school, I used to dread the receipt of report cards. Sometimes it was because I was embarrassed or ashamed of my grades. Other times I just didn't want anyone else to know what was happening at school. Perhaps I was nervous about meeting expectations. It was long long ago. But now I'm the parent who watches and listens to see how HER kids are doing in school. But they still make me nervous.

Yesterday, I had previously arranged for a phone conference with Rachel's teacher to discuss her progress during Extended School Year (ESY). The last few notes from her teacher have been worrisome so I was a bit concerned going into the meeting. What was going on with her? We haven't be able to do anything about her new ADHD diagnosis as we are still waiting on meeting with the doctor again. She's been "sad". Huh?

And then there's Simon. I received a note last week that his teacher would be calling me to discuss his progress during the summer. There has been minimal communication during ESY between me and his teacher -- when I pick them both up at camp, I ask how his day went and I get a 1-or-2-word answer.

Well, the phone rings yesterday morning at 8:45. I'm not expecting Rachel's teacher to call until 10:15. When I look at the phone, it's MPAC (Simon's school). No time to prepare.....what has he been up to? Has it been a good summer? Or is he just getting by? Deep breath, and pick up the phone....."Hello?" And then we get started.

His teacher is telling me about his ESY goals and how he has progressed positively on all of them. He's not only maintained, but has continued to make significant improvements, including being able to sit and perform tasks for upwards of 10 minutes with minimal prompting. So, time for me to ask my 2 big questions.

Easy one you think he's getting close to ready for "potty training"? I've been seeing some signs lately, but because of the many changes that were pending (school ending, ESY, travel in August), I haven't wanted to touch on this yet. She felt that he is definitely ready to begin potty training. So, once he gets settled into the next school year, we'll start working on that. We suspect he will be much more difficult to train than his sister. But time will tell.

Now, the big question.....this is a teacher who first met Simon on July 5, but she is an MPAC teacher and is familiar with MCPS (Montgomery County Public School) programs.....with the added year of pre-K that he is about to start, will he be ready for "The Learning Center" for kindergarten, or will he need a more intense program (with work in the appropriate areas)? Her feeling is that he's not quite ready for it yet, but we should definitely consider this as his track and work on making sure his IEP goals for the school year prepare him for this learning environment. SUCCESS!!!!!!!!

So, one down, one to go....

At 10:15, the phone rings again. This time it's Rachel's teacher for our previously planned conference. Her teacher begins to explain to me what she means by her feeling that "Rachel is simply 'sad'". She seems to have a connection with another student in the class (and bus), similar to her connection with Simon. She really cares about his feelings and wants him to be happy. Unfortunately, this other student is often sad and cries often. On the days that this boy has been absent, she's been very happy. But when he is present, she is often subdued. I love that she shows the empathy, but hate that it expresses itself in this way. This is something we need to seriously work on. But, on the plus side, when she is subdued like this, her ability to focus increases. She seems to lose the wiggling and the jumping tendencies. I have to be sure to bring this up with the doctor when we do meet next week to be sure that we don't medicate her to that extreme -- I want her to be a happy little girl, not on the verge of tears all the time, even if it does mean she's a bit more hyper.

On another note, she has been able to work in small groups this summer, something that she really hasn't been able to do up to this point. This is a crucial skill for kindergarten. And, considering we have another year, if we can get her focus under control, who knows what we're going to see when she enters kindergarten in the 2012-13 school year.

So, two parent/teacher conferences done by 10:45am yesterday. Two positive reports. And we know what we need to do for both of them as we prepare to begin another year of preschool. If we can work out some of these issues, I will realize my wish of having all 3 of my children attending the same school in a year. That thought makes so much of this worth while.

Tuesday, July 19, 2011

What do people see?

What do people see when they see me walking with (specifically) Rachel and Simon? Do they see a mom with 2 kids? If we are having an "A-moment", do they think how could I allow my children to become such spoiled brats? Or do they actually see the autism? Can someone who has never seen me or my children before recognize the struggle that I must mentally prepare for every time we leave the house? I always feel I have to explain myself or their behavior away, even when things aren't so bad. I feel I have to prepare everyone for the imminent breakdown that is coming so they don't see me as "that terrible parent". I shouldn't care about this so much. I shouldn't anticipate the negative moments.

But I do.

They happen all the time. Things aren't as bad as they used to be....we have learned several tricks over the last couple of years (gummy bears and cookies are probably our most successful ones). When I would pick Daniel up from school this year -- I was known as the "Gummy Bear Mom" because I always had a pocketful. I would hand them to Simon periodically as a reward for good behavior, or when he asked me appropriately. Most of the Moms around me, knew us by the end of the year, but what did they think of my parenting techniques before they came to understand our struggles? And, again, why did I care?

Today, I will be picking Daniel up from his second day of camp at a facility Rachel and Simon have never been to (Hill's Gym). It's a gymnastics facility, similar but much larger than the familiar "The Little Gym". Yesterday, when I picked him up, Kevin was with me and he stayed with the twins in the car while I collected Daniel. Today, he's back at work and I have to do the job on my own. I can see it now. Rachel is going to try to get into that gym. Simon is going to just stop in his tracks, causing me to drag him inside the facility. Because of these fears, I'm going prepared. The leashes are in the car and I'm going to put them on these two before heading into the building. That's going to cause it's own battle and we'll already be on a losing path before heading in. But the need to contain them outweighs the possibility that they will behave when they get inside. I'm actually almost hoping for rain so that I have the excuse to keep them in the car while they bring Daniel to me.

And what will these people think of me? These two look like they are 6 years old at first glance because they are so tall (even though they are only 4.5). 6 year olds aren't led by these leashes (oops....I mean harnesses) -- they are designed for 2 year olds. 6 year olds aren't given gummy bears every few minutes for good behavior. There is no parent that will be there today who knows us. No one knows that we are an autism family. No one knows that my kids behave more like 2 or 3 year olds despite how they may appear at first glance.

People have asked me what autism is like on a daily basis. This is probably one of the better examples. This is what it feels like. Knowing that you are about to step out into the world with children who one on the outside would think should know better, but don't. Knowing that, unless they are familiar with autism, if we have an "A-moment" people will probably be whispering behind my back once they assume I can no longer hear them (if I'm lucky -- there are some who don't care if I hear or not). Knowing that others consider me a sub-standard parent because of the behavior of my children, even though in many cases, it is beyond my kids' control or understanding.

It really shouldn't bother me. Not after all this time.

But it does. And it probably always will.

Thursday, July 14, 2011

Thinking Back

I recently received a comment on a post from nearly 2 years ago (CSAAC and Making It Work), asking about what I thought of working with CSAAC (Community Services for Autistic Adults and Children) as they are preparing to look into their services for their son. So, I decided to write a "Way back when...." post looking back to where Rachel (and I) was then and where we are now...

I was living in a different world. Yes, I was still living in the Autism World, but it really does seem like it was different then. We had virtually no verbal language to speak of. We were getting so little sleep. All I could do was worry. I was struggling to deal with my children's diagnosis. We were still in the process of GETTING that official diagnosis. I was barely keeping my head above water at that point. And it felt like we weren't getting anywhere.

Then, we started working with CSAAC. It was about that time that things started to change. It wasn't just working with them. It was everything. It was my own acceptance of what was going on. It was my realization that this was my life and my change in mindset. It was me learning how to incorporate the parenting techniques that I was learning through More Than Words. It was recognizing that, despite being twins, Rachel and Simon are VERY different children. And it was the introduction of the intense ABA that was provided to Rachel by CSAAC.

I remember several parts of the whole "CSAAC Process" very clearly. I remember having a phone conversation with our case worker with Early Intervention services where she pointed out to me that Rachel was failing to grow in the classroom and we needed to look into something more directed (one-on-one ABA). I remember listening to her convince me, and despite not buying what she was saying, turning around and attempting to convince Kevin that this was what we needed to do. I still questioned her about it from time to time, but I trusted MCITP (Montgomery County Infants and Toddlers Program [local Early Intervention provider]) and I knew that the classroom wasn't working. I just didn't think that you could take such a rigid child and put her in an even MORE rigid environment and see her thrive. But we had to try. I remember the nightmares this caused me. I remember thinking that this was our last chance -- if this didn't work, we really didn't have another back-up plan. I was fearful of losing all of that potential in this 30 month old little girl. It literally would wake me in the middle of the night in a cold sweat. What would we do when this didn't work (I truly didn't believe it would)? But I knew we had to try....

I remember meeting with the psychologist at CSAAC and watching her evaluate Rachel (and Simon who, of course, came with us). I remember her telling me that it would take a while before Rachel would be a willing participant with the program (expected up to 2 weeks). Until then, she warned me that she would SCREAM and fight the process with everything she had. I remember struggling with our schedules, trying to find 10-12 hours weekly, in 2 hour blocks, working around naptimes, where I could be home so the sessions could take place. Daniel was in nursery school 5 mornings/week, Simon still had school, we were just joining the Parent Group, and anything else that came along.

And I remember the first clinic session after we began. We had a clinic session just before starting so the techs could meet Rachel and they were able to tailor the starting points of her programs to her current levels. I watched her growth in just 2 weeks. I saw her happily go to her teachers knowing she was going to play games and see her favorite motivators. I watched her look into their faces with minimal prompting (except the psychologist). And those huge strides continued, session after session. It didn't take her 2 weeks to adjust to these in-home sessions. It took her 2 MINUTES. The only consistent problem she had was transitioning from break with me and Simon (and sometimes Daniel) to going back to her room for more work. I watched her learn to play with toys (correctly). I watched her understand how to communicate. I watched her learning to behave and understand some basic life skills. We even worked on drinking from a cup, brushing teeth, and wearing a blanket at night. CSAAC and in-home ABA was such a HUGE success!!!!!

That was Rachel's turning point. And in many ways, that was mine. It made me realize that when we provided her with the right stimulation and would work with her in the ways that she needed us to, we would see progress. Since then, she's been in an ABA-based program and we are starting to consider ways to transition her away from it all so that she can attend a typical school for kindergarten, even if she needs to remain in a special needs classroom. Through ABA, we have seen her grow in every possible way, and for that, I am extremely grateful to CSAAC, MCITP, her teachers, and everyone. And now that we are about to enter a new phase in her treatment (beginning to address her ADHD issues), I only hope that we can continue her success!

Wednesday, July 13, 2011

Who reads my blog?

Like many people, I feel I have a story to tell. That's one of the reasons I "blog". is looking for the Top 25 Autism Blogs. My blog was nominated and is (thus far) placing quite well, but dropping. Actually, it's been nominated twice. If you read this blog and enjoy what you see, please click the link and vote for "My Family's Experience With Autism" as well as your other favorite blogs listed. Also, feel free to nominate others. New ones are being started all the time, and all the stories deserve to be recognized.

But my story here is constantly changing. First I wanted to educate. Then I needed a place to cry and get all of my frustrations out. Then I went back to trying to educate, but in a different way. I explain what we see. I still tell specific stories of our lives. But I also try to get others to see what living with a child learning through autism is like. The phrase I use is that I try to press others to "get it". How we have to plan out every detail. How we can't take anything for granted. And how every day is another story. And the direction of this blog will probably change again. And again. And again. In other words, this blog is whatever I need it to be at the time I sit down to write.

So, I hope you enjoy reading it. I hope you have been inspired to vote (and vote often) for this blog at the link above (you can vote daily). And I hope you will vote for other blogs that have inspired you or that you are writing yourself. Because we ALL have a story to tell!!!!!

Friday, July 8, 2011

Some Cross-Promotion

Hi again....

A post I had written here has been re-posted on another's website.....Autism and Empathy.

This is an interesting website to check out. I recommend it if you are looking to see others views on this subject.

Thursday, July 7, 2011

3 Amazing Words

"I Love You". 8 letters with 2 spaces. It really sounds simple. But to a parent of a child with autism, it's elusive. So many of us never hear these words, even if our children are verbal. At least not with feeling and a true comprehension of the meaning behind them. We know our children love us. We see it in their eyes. We see it in their behavior. But knowing it is not the same as hearing it.

I heard these words from Simon for the first time almost 2 years ago, after a VERY bad morning. He snuggled up to me before falling asleep for his nap and said that to me. I remember coming downstairs and crying from both joy and the incredible stress of that morning. As amazing as I felt when Daniel said those words to me for the first time when he was about 18 months old, when Simon had said those words, it felt like such a HUGE victory. He doesn't say it often, but it does come out occasionally.

But Rachel, we were still waiting. She is extremely verbal. Perhaps it just isn't going to happen. I love her, and I know she loves me, and that's enough. Of my 3 children, she is probably the most effective at non-verbally expressing that connection that we share. She clearly loves her Mom (and Dad too).

Yesterday afternoon, Simon is playing on the computer. Daniel is playing Lego Star Wars on the Wii. Rachel comes walking over to me. She climbs on my lap and gives me a hug. This is quite typical for her. She had a long day -- school in the morning, camp in the afternoon and then the stress that always happens coming home with 3 young children. She nuzzled in and said it. "I Love You."

Wait a minute. Did I hear that correctly? No. Her mouth was nuzzled into my neck so hard I had misunderstood. Then she stopped hugging me and looked me right in the eye. "I love you." Hug again. Then she climbed down and went to watch the game Simon was playing on the computer.

That was an amazing moment. I had said several times before that I just wanted to hear her say those words to me, with feeling. And on July 6, 2011, that wish was realized. August 14, 2009 and July 6, 2011 are two ABSOLUTELY amazing days for me and my twins.

Wednesday, July 6, 2011

It's Time.

Time passes. You don't see it most of the time. More often than not, when we are feeling the stress, it feels like time actually stops. But it doesn't. It keeps going. And if we don't get on top of issues, they tend to grow. Or they will prevent growth.

We have been sitting on questions about Rachel for a very long time. What is going on with her? We know she has autism. It may have taken us a long time to come to terms with it, but we know it to be true. But is that all? We had been wondering if she also has OCD (Obsessive Compulsive Disorder) or ADHD (Attention Deficit and Hyperactivity Disorder).

Our concerns about OCD started probably before we knew about the autism. We know how ordered she can be. She can't stand it when things spill or when even a drop of juice from her cup spills on her. We used this to our advantage when potty-training her -- she couldn't stand being wet so she needed to go to the toilet. It worked. Everything can have a positive spin to it, right?

ADHD on the other hand, we had been pushing off feeling that it wasn't very important. When she was in the classroom, working with her teacher one-on-one, she was learning so well. They are constantly looking for new programs to teach her. They are now working on teaching her to write letters and numbers. We know she can read. She loves to play on the computer, and she can play the games and navigate through them (and the permitted websites she visits) appropriately.

We can wait on the ADHD.

Or can we?

When is it the right TIME?

Earlier this spring, I wrote a post about how she was having difficulty in school attending to the teacher in the typical pre-K classroom. Her inability to focus in that classroom was preventing her from learning in this setting and preventing her from interacting with her NT peers, the reason why she was in there. She spent 6 months attending this class and was unable to expand the time in the classroom from 15 minutes. The hope was that she would spend the morning in her special needs classroom and the afternoon in the NT setting. 6 months later, we're still not even taking steps to get there. And all because she can't attend. We need help. And a different kind of help than the local system can provide. We need a physician to determine if there is more going on than just autism. We need to seriously consider ADHD. And we need to do it NOW!!!!

After I went to visit her at school this spring, I called the doctor who originally informed us that the twins were on the spectrum and made an appointment to ask about these 2 co-morbid diagnoses. We had to wait until late June, but I got the appointment and we went.

The visit was, well, I'll call it interesting. We were called back and they measured Rachel's vitals. She was a bit rambunctious. She allowed them to weigh and measure her. She allowed the nurse to listen to her heart, take her blood pressure, everything that was expected of her. But she was playing with her. She kept trying to grab the stethoscope. She wanted it all for herself. But she did cooperate. Then we sat there for a little while and I think the doctor was watching her. She was trying to run in and out of the room. To me, this is normal and almost good. But it's another little tick on the doctor's clipboard. Then we head down the hall to begin the interview. The doctor asks Rachel to follow some simple instructions (come with me and sit down on the couch [2-step instruction]). Rachel is curious and looks everywhere else. But she does follow the doctor. But there were letters (stickers) all over the wall in this room. I had to take her by the hand and lead her to the couch. And she kept shrieking out the letter names she was seeing. The doctor wasn't sure if she was reading them or just reciting letters (I knew she was reading them).

Once we got Rachel to sit down, the doctor started asking her some basic questions (such as "How old are you?"). Rachel refused to look at her. Rachel continued to read the letters off the wall. So we changed tactics. "Rachel, can you find a letter 'D'?". She did that one without any problem. "What letter is that?" (pointing to a "Q" behind her) -- no reaction. After trying for a while, the doctor asked if I had something to distract her and we could have a conversation. So, I gave her my iPhone and allowed her to play.

After a while, the doctor started asking Rachel questions again. This time, she still had the phone. And this time, she had no problems answering ANYTHING the doctor presented to her. She needed that external object to focus on. And she wasn't just randomly playing a game. She went to my photo album and was looking at the pictures of her brother (Daniel at this moment). She was watching the video of Daniel at his swim meet that I had recorded while shouting my cheers. She was interested in looking at their FACES. It was strange to see the doctor's face.

Overall, by the end of the visit, the doctor told me that her impression is that we are looking at ADHD (but not OCD). And she does believe that we need to take action because it is preventing her from progressing. It is actually creating a stumbling block for her. It's possible that she will be able to be successful in a fully mainstreamed setting within a few years with little to no assistance, IF we can get the ADHD under control. So, now I'm starting to do my research. What IS ADHD and what can we do about it? What are the best medical treatments for a 4 year old girl with a co-diagnosis (and primary diagnosis) of autism? And how should this be managed?

That last one is very important. You see, this doctor is in the process of retiring. She will be leaving this practice at the end of the summer. She has given us some recommendations and will work with us to find someone to continue managing Rachel's treatment, and we are going to discuss this further when we go back in a couple of weeks. But we need to find a different doctor to manage her care.

This is my own fault. I knew we needed to look into this. I had suspected it for quite a while. And because I had put it off for so much TIME, I now have to deal with the added complication of needing to find a new doctor whom I can trust to help manage this long-term.

We have seen so much progress in both of them without medical intervention, I keep forgetting that body and brain chemistry is why we're here in the first place. We also have remember that there is a medical component to all of this and we need to look at all things if we are going to find an answer to make sure they can both succeed. And that's what I need to do.

Sunday, July 3, 2011

Proud Moments

Like I said before, there have been many things that have been happening over the last couple of weeks. My last post described a rough morning. Today, I want to share with you an example of a GREAT day.

First, let's talk about Rachel. She has been attending The Little Gym of Germantown for about 3 years and has been watching her older brother for an additional 9 months before she began classes herself. This is one of her favorite places on the planet. And they have a dance/party room in the back with a mirror that takes the entire back wall. She LOVES to go back there and pose for herself in that mirror. But she has always had some behavior issues there. She spent far longer in the parent assisted classes than one would expect because of the honest expectation that she wasn't ready to progress to the next level yet. Then, this last school year, we put her in the "Funny Bugs" class (for 3 and 4 year olds). This is the youngest gymnastics class they offer that the children go in on their own. Throughout the school year, she has grown into this class. She has difficulty following along, but is not too much of a disruption to anyone that they continue to allow her to stay where she is.

The Little Gym runs a summer camp. You pay for each day and the sessions are 3 hours long. You have to be potty trained in order to attend. We decided to see what would happen if she went. We purchased 10 days in total, hoping that she would go for 5 and Daniel would go for 5 (but willing to give 9 of them to Daniel if Rachel didn't like it). Rachel's teacher for this school year runs the camp on Wednesdays, so on June 22, we dropped off Daniel at this camp, went to the "cookie store" (translation, grocery store in the same shopping center) to get cookies for the 3 kids, and then dropped her off to spend these 3 hours there with her big brother. We dropped her off later because until about 15 minutes into the camp, there is another class ongoing in the gym itself and her teacher and I both felt that it would be better if she went directly into the gym rather than into the back room to color (an activity that Daniel enjoys, so he went right in). She arrived right around 10:45, and her teacher was ready for her. I made sure she was settled, handed over her lunch, gave some little instructions to make things easier for everyone (like how she prefers to eat her lunch and how someone will need to go with her to the bathroom so that she doesn't clog their toilets using an entire roll of toilet paper), made sure they had my cell phone number and left with Simon.

Simon and I spent the next few hours running some errands and spending some quality time together. It was nice to give him that Mommy time while still getting some chores accomplished. And the phone was SILENT. But 1:30 came soon enough and it was time to pick up the 2 campers. I drove over and got Simon out of the car, just as they were dismissing the group. Daniel came running over to me wearing a newspaper pirate hat and doing his best pirate impersonation. I knew he was going to have a good time. He's done this camp the last 2 summers and Pirate Week is one of his favorites. But how did Rachel do? I found Ms. Katie (the teacher) and she told me that it went better than ANY of us had expected. She knows Rachel's issues as she has dealt with them for over a year. She knows how to pull her in and when to back off. Rachel came over and gave me a HUGE hug. She told me that she had FUN. She told me she wanted to go AGAIN. Her teacher told me that she participated in most of the activities and listened reasonably well. She also told me that Rachel behaved during lunchtime and really ate up the entire experience. We signed her (and Daniel) up for another session on August 3.

Now, I know we stacked everything in our favor for the experience to go well. We sent her VERY soon after the end of school to minimize any chance of regressions. We sent her when we knew she would be there with her favorite teacher. We selected a day where the enrollment was relatively low so there wouldn't be too many other distractions. We sent her with her brother so there would be another kid present who was an ally and would help look out for her (and was he EVER a GREAT big brother that day). And we also made sure to send her on a Wednesday so she would be working with Ms. Katie. All but the first of these will also be true on August 3rd. And it will be shortly after the end of ESY (Extended School Year [summer school]), so again, we have that reasonably covered. But I was smiling about our success here for 2 days!!!!!

Now Simon has also done something of note that I haven't had the chance to talk about. He started taking music lessons at The Academy of Fine Arts back in November. That, despite a difficult first session, has been a huge success for him, as we had anticipated. He's extremely musical and he really can grow into this allowing music to be a powerful voice for him when all else fails. He had his last class for the spring on June 22 (coincidentally the same day as Rachel's camp experience) and at the end of the class, he was asked to come up and play for the entire class. He had been invited to this once or twice before, but they were always disasters. He had trouble with all the steps -- walking up to the piano, sitting on the bench, playing the requested music (in all cases, a C-Major scale), standing up and bowing as the audience applauded and then coming back to sit down. I wasn't sure what to expect this time around. Then, this happened.

Oh, My GOODNESS!!!!!! That CONFIDENCE! That SMILE!!!!! That BOW!!!!!!! That AMAZING little boy!!!!!!

And, to top off the day, Daniel had his 2nd EVER swim meet after Simon's last class was over, so after heading home, Daniel and I got into the car and drove to the away meet. He's a kickboarder on the Stratford Knolls Sharks. When he started on this team on June 1, he couldn't put his face in the water. But he's been working at it and he came in 2nd in his heat!!!! He had a coach beside him, but she didn't lay a finger on him the whole race. This is the last time he had a coach beside him while swimming kickboarding.

So, June 22 was a WONDERFUL day!!!!! All 3 of my kids made me one of the PROUDEST MOMMAs you could find anywhere.