Friday, July 23, 2010

Simon's Memory

In late spring, our pediatrician's office moved a few miles down the road. It was a slight inconvenience for us (since we've moved, getting to her office is much more difficult than it used to be), but not too big a deal. She's still reasonably close to us, and is still affiliated with our preferred hospital, and that's the more important part. And, even more important, I (who can be really picky about doctors) really like her and am comfortable discussing anything about my kids with her. So, we followed her to her new office.

Both yesterday and today, Rachel suddenly broke out in hives that resolved almost as quickly as they appeared. When this happened yesterday, the teacher and administrator were alarmed enough that she was taken out of the classroom, partially because they were concerned of the possibility that this condition was contagious, but more so because they wanted her near the phone so, if she started having difficulty breathing, they would be able to call 9-1-1 immediately. After hearing about this when I picked her up yesterday (it happened just prior to dismissal), I called the pediatrician this morning, and she wanted me to bring her in for an exam.

Well, after picking them up, we're heading over to the new office, and I'm focusing on the building number trying to find the new office. All of a sudden, in the back seat, I can both hear and feel Simon getting agitated. I KNOW it's going to be on the left side of the road, and I pull into the left lane. Simon is getting more and more upset. We approach a traffic light. I recognize where we are. The building on the corner is the SAME BUILDING as the audiologist's office where Simon had his hearing tests. OH NO!!!!!!! Simon is now hysterical, having a full blown tantrum in the back seat. And I'm pulling into the building parking lot because, yes, the new office is in that same building. Overall, we were there for nearly 75 minutes. He spent most of that time hysterical, because not only did he have the fears of being in the doctor's office, but also of being in THAT PARTICULAR BUILDING. Now I am considering changing doctors because I really don't think he's going to be able to handle going into that office. We'll try it a few more times before I take that step though.

We have been in this building 3 times before for Simon's (and Rachel's) hearing tests. The first time was in March, 2009, just before we were told they were on the spectrum. Since that went VERY badly, we went back in April, 2009 to see if we would be able to get better results. No such luck. Then we went again to get our final answer in August, 2009 (14th to be precise, ALMOST A YEAR AGO), and Simon recognizes it from that long ago.

What's happening in that brain of his that he has that kind of memory? How can he take that experience from more than 11 months ago and remember it well enough to recognize we are approaching that building from blocks away? What else does he remember? What else has made THAT STRONG of an impression on him? Does he remember EVERYTHING??? There are so many times I really wish I could crawl around in his brain for just an hour or so, just to try and understand him a bit more.....

Monday, July 19, 2010

I don't think they know what they're getting into....

.....on Friday, Simon came home from school with a permission slip. They are planning a field trip to an outdoor concert, just a short distance away from the school. ARE THEY NUTS!?!?!?!?!?!?! I know how Simon handles shows. And his school has been informed about this as well, as we worked with them while we prepared (or attempted to prepare) Simon for that Laurie Berkner Band concert in May.

There are outdoor concerts near his school every Thursday morning. I had been debating keeping Simon out of school to take him to one of these performances (and then bring him to school after we left the show [at it's end or earlier]), but I haven't done this to date. We know he needs to learn how to handle performances. The field trip includes (1)walking over there (2) attending the concert and finally (3) walking back to school when it's over. I repeat myself from earlier in this post....ARE THEY NUTS!?!?!?!?!?! Simon will have SO MUCH trouble with this.

They are asking parents, if they are available, to come help out. I am unavailable -- the time I'd be required to be there I'll be getting Daniel to HIS camp. The alternative is taking Daniel to the concert. Dealing with Simon will take all of my attention. If I drop Daniel off at his camp, by the time I arrive there, I'd just be in the way and getting Simon started again, IF they'd managed to calm his down. And to be honest, I don't want to see this. I remember all of our previous experiences with this and it's just simply heartbreaking.

I really want him to attend this concert. I don't know the group performing (which will make preparing him for the experience a bit more difficult), but it's an experience he NEEDS. But how do I set him up for the torture that I know that experience will be for him?

When I went to pick the twins up today, I spoke with the Education Coordinator there, bringing up my concerns about this concert and mentioning my desire for him to attend the trip. She reassured me that they'll handle it just fine. But I've SEEN him at a concert where we spent 6 weeks of bombarding him with anything that had been suggested to prepare him. Now we're talking about 6 days or so and I suspect there's going to be no preparation by the school. As soon as he sees the stage and the speakers, the screaming is going to begin. And, as a big kid, they're going to have a serious fight on their hands. I need to figure out how much I need to intervene here.

He needs to learn. And so do I.

Thursday, July 15, 2010


What is it? What does it mean? According to the dictionary (, balance is "a state of equilibrium or equipoise; equal distribution of weight, amount, etc." But what does that MEAN?

As a parent, the word "balance" is just there. It doesn't seem to mean anything. It often feels that our children get everything that we as parents can give without going COMPLETELY insane. And even then, they continue to get more of that energy. There is no "equilibrium". There is no "equal distribution". Those words come into play only when there's more than one child. At least, we TRY to put that into practice. Who knows if we are ever truly successful.

One would probably think that, because Rachel and Simon are autistic and Daniel is not, that means that Daniel's share of the time and attention would be less. Also, Daniel is older so he should be capable of going with less of the attention. Well, reality is Daniel is used to having us to himself, even though he was only 21 months old when he had to share the attention with his brother and sister. He doesn't care that they deserve a fair share, or that Mom and Dad need to "balance" their time and energy across 3 children. He was here first and he can be pretty loud and demanding. Sometimes as parents we succumb. Other times, we have to tell him to back off.

Rachel is a lot like her older brother. If she wants attention, she's going to get it. She doesn't care if it means throwing a fit or pushing someone else out of the way. If she wants it, IT'S HERS for the taking. It's caused the two of them to butt heads a bit, but in general, they both seem to understand that in each other. And, to make it easier, the times where it's the worst is when there are 2 parents here. When that happens, Daniel will often gravitate towards his Dad and Rachel will gravitate towards me. So, that works out just fine.

Then there's Simon. Simon sees, probably, more than we give him credit for. He seems to know when our attention has been diverted by the other two. He recognizes that the time has come to do things that we normally try to prevent him from doing -- usually stimming on a particular toy. Fortunately, for us, his favorite stimming toys make a lot of noise and we can hear him returning to these behaviors. But he loves to jump behind the couch and stay there for however long he can get away with it. He often DOESN'T want "balance" -- he seems to WANT to be ignored. That's what we have to stop from happening.

We need "balance".

Monday, July 12, 2010

"Me Time"

I think one of the things I have been looking forward to the most with all 3 of the kids in camps/schools is having "Me Time" again. I had gone so long without it (other than the 20-30 minutes or so after Kevin came home from work, and that was usually just enough time for me to deal with laundry or [shocking intake of breath to be inserted here] take a shower). But once I had found it, losing it again, even for such a short time, was so difficult.

Each time a child began his/her summer program (and for Daniel, it's been true each time), I felt like doing the "Dance for Joy". When Daniel started his first camp (shortly after Rachel and Simon finished school), I was elated. When Rachel got on her bus on 6/28, I was relieved. Then, on July 6, when Simon got on his bus, I was overjoyed. But that was NOTHING compared to the feeling of dropping Daniel off at the start of his next camp (and full-day at that) just 30 minutes later. I was so excited I was smiling from ear to ear and just ready to dance a jig (and for those of you who know me, you know I DON'T JIG). I came home, took the dog for a walk, and then met my friend for coffee. She was unavoidably detained, but that didn't matter. I just sat in Starbucks with my iPhone -- made a leisurely phone call or 2, played a game -- and didn't have Rachel trying to push the buttons or Simon shouting "Say Hello" or Daniel just doing anything he could to interrupt me. The whole thing was PURE BLISS. We are now into the second week of having from 9 until 3:30 of "Me Time" -- and even though there are many things that must be done (namely getting this house cleaned up), I don't have to answer to anyone but myself. And I can take my time doing it.

Why is "Me Time" so elusive to all parents (not just to parents with kids with any sort of disability)? We all spend time with our children, and love to do so. And, I had been perfectly happy without it -- I didn't even miss it. That is, until it was rediscovered when everyone was in school. Now I spend much of my time with my kids looking forward to that relaxing cup of coffee with a friend, or spending time on the computer, or even reading a book (not a typical favorite activity of mine -- need to work on that).

I find myself thinking ahead to mid-August, after we return from visiting family. By then, ESY will be done. Camps will be done. School won't be starting again (for all 3) until August 30. That will mean just shy of 3 weeks where the kids will all be home with me. One of those days, Kevin will also be home as we are planning to take everyone to the county fair (that's the plan NOW, I should say). MOMS Club Activities will hopefully be plentiful so we aren't stuck at home that whole time and I'll at least be with other people who I know and enjoy the company. But as anxious as I was for July 6 will be true again for August 30.

And just because of that newly discovered "Me Time".

Friday, July 9, 2010

The subject is returning......AGAIN

What to do about Simon? This question never seems to go away. And it's driving me CRAZY!!!!!! Is he in the right program? If not, what program IS the right program? Is he in the right class WITHIN the program? Or does that not make any difference? What am I supposed to do about him?

I really wish this wasn't so difficult. And it really shouldn't be. The staff at MPAC is unbelievably approachable. However, when I went to talk to them about him last year, I couldn't bring myself to voice any of my concerns. The words just wouldn't come. I let them tell me how much he's improved during the previous 3.5 months while I just sat there nodding my head. And I allowed myself to be satisfied that they would come to the house and show me how to see these improvements at home (since I wasn't seeing it there and he was obviously doing these things at school). Well, we had that home visit, and things seemed better for a little while. And then, that alone time with me and Simon last week also seemed to show me how much better he really is doing. But it still feels like it's not enough. I watch him flapping his arms like a crazy person at the table. I watch him throw fits all the time and I can't bring him back until it has a chance to cease. I'm watching his violent tendencies starting to get in the way of his relationships with his brother and sister. And I FEEL LIKE THERE'S NOTHING I CAN DO ABOUT IT!!!!!!

I hate feeling like this. Right now I'm picking him up from school/camp daily, and I'm seeing the other kids in the program. I see where he lines up with them. I see the abilities that he has that the other kids don't (and what the other kids are doing that Simon's not). I really probably need to once again sit down with the school administrators again and try to figure out what's going on. In some ways, I'm hoping, now that they are getting to know Rachel as well (through this camp they are running), they will understand a little better what I'm going through. No one can question her progress. And she has set a standard that Simon seems to be incapable of meeting. But how do I know if this standard is truly unattainable at this point, or if there is something there that I have to fix?

I know I have the option to request another IEP meeting. However, I'm really not sure that's the best course of action right now. I don't know what the answers are. What if, during that meeting, they make changes that make things WORSE? I feel like I need to have the answers for myself before taking that step.

Normally (and sitting here right now), having the twins on the spectrum doesn't really bother me much (as compared to one OR the other). It allows me to treat them the same way (or at least similarly) and not feeling like I'm favoring one over the other. I will admit -- I would have preferred if they were both "neurotypical". But that's just not the case. But this is where having them both there really causes me concerns.

I just wish everything could be simple and that I could just walk away with all the answers.

Tuesday, July 6, 2010

July 6th has arrived!

It's been a crazy few weeks, but my reward has come at last. All 3 kids are currently at school and/or camp. That means time to meet my friend for coffee. That means spending quality time at home with the dog. That means taking time to sit here comfortably, eating my lunch and writing a blog post. That also means time to clean this house (but we're not doing that today -- that'll wait for tomorrow).

Simon's bus arrived around 8:30 this morning. He wasn't sure about getting on board today, but once he recognized his fellow bus rider (same child from the school year) he seemed to recognize that everything was all right and this was just back to normal. I'll find out later today how his return to school went. And, in some ways more importantly, I'll get to see how he and Rachel are doing at camp now that they are finally together (as I still believe they should be, if I felt there was a single program that was right for BOTH of them). But after dropping Daniel off at his "Multi-Sports Camp", I SO WANTED to perform the Dance of Freedom. I'm sure I was wearing the goofiest look on my face, and I didn't care to see who stared.

The last few weeks have been, as I said earlier, a bit crazy. Daniel had me to himself for a week-and-a-half, and we did a lot of fun things. Rachel and Simon, together, had me to themselves (without Daniel, I mean) for a week. Then last week, Simon had me all to himself when Rachel began ESY. There was so much back-and-forth. The poor dog was so ignored because Rachel is still slightly afraid of her. And, to make matters harder, Kevin was working longer hours than normal (and dealing the increased DC-area traffic which is the consequence of working late) because he was faced with a deadline.

But last week, Simon was able to have something that NEVER happens around here -- total Mommy Time. We had different activities planned for every morning, some of which were just necessary, and others were just fun. He got his haircut (necessary -- definitely NOT fun). We went to playgrounds (indoors and outdoors). We went to a MOMs Club activity (party). And then, what was intended to be the best part of the week, we went to the Splash Park.

I want to talk a bit about those last 2 things. First, the "Canada Day Party". The co-president of our local MOMs Club (which I am also on the board) hosted this event in her home. She has a 4 year old and (I believe) an 18 month old, so they have many toys in their home. But we had never been there before. As we were walking to the front door (parked down the street), Simon started off excited. Then he started to get agitated. He started saying "Oh, No!!". I decided to turn this into a game and said "Oh, Yes!". We also kept changing how we were walking -- straight walking, marching, running, stopping, etc, which kept him occupied and helped him to forget we were going someplace new. But, by the time we were approaching the front door, apprehension was there, full force. We rang the bell, but Simon was trying to pull me away and back towards the car and starting to scream. Our host opened the door, and I hope didn't think too badly of us. After stepping inside and realizing it wasn't going to end quite so soon, I tried something new. I went downstairs to their play room (which was relatively free of other kids at that moment). We found a couple of toys, including one that allowed Simon to "stim" on lights and noise. Simon was immediately drawn to this. He stopped screaming, so I let him play. Over the next 20 minutes, I was able to pull him away from that toy and get him slightly more engaged -- he was able to share with the other kids a bit (with a lot of coaxing) and was able to go from toy to toy without too much difficulty. He continued to "stim" most of the time we were there, but at least he would change objects from time to time. And he was able to cope with being in an unfamiliar setting. This may not have been the wisest course of action, but it did work.

Now, the Splash Park. In my mind, this was going to be the best part of the week. We were going first thing in the morning, so it would be as empty as possible. Simon LOVES his bath and he loves to splash and be splashed. So, what about the Splash Park is there NOT for him to like? Well, I discovered what there was to NOT like about the Splash Park as soon as I opened the car door. THE NOISE. All of those fountains going off are NOT exactly what I would call quiet. The screaming started as soon as I opened the car door. Hands over the ears. Howls. Kicks. Limp body while I was trying to pull him out of the car and get him to stand. I brought him into the bathroom to put on his swimsuit. That muted the noise a bit and he calmed down. Then we stepped out of the bathroom. Screams returned. I put down our stuff and brought him over to one of the calmer fountains -- just to get him wet. I hoped that when he realized it was lots of fun and it's just like his bath, he'd calm down. Maybe if he hadn't already gotten so hysterical, it would have worked. But, probably not. He was not going to enjoy this activity. Period. He had made up his mind. Drawn the line in the sand. After about 10 minutes, I changed him back into his clothes and back into the car we went. As soon as he realized he could no longer hear the noise of the fountain, he truly began to calm down. So, what I had hoped would be the most fun activity of the week was, by far, the biggest disaster. But there doesn't seem to be any negative lingering effects.

But now it's just me and the dog. Time to catch my breath and get things done. Time to read the book that I promised to review. Time to get this house under control. Time to take a shower when I WANT to rather than when I can squeeze it in. In other words, time to go back to being human.