Wednesday, May 26, 2010

As the summer approaches....

.....we are getting ready for a new form of insanity. Daniel's schedule is already changing -- he will be graduating from pre-school tomorrow morning. It's hard to believe -- he's been attending this nursery school for nearly 3 years and after tomorrow he will have "graduated". He'll be going back there next week for a week-long 1/2 day camp, but the "school" part is over. It's been a good experience for him and he's now ready for the new experiences kindergarten will bring.

This makes me a bit nervous. Last year, when Daniel finished school is when I fell apart. I don't know if it was because I had the 3 kids home with little-to-no social activities planned, or just that it took that long for reality to set in that it just clobbered me over the head at that moment. But after Daniel started camps, things started to get easier. This year, we're more prepared on that score. He's starting camps later in June that will take care of him for 6 weeks (2 weeks each at 3 different programs) and range from 3 hour programs to a full-day 7 hour multi-sport camp. Plus, we're planning on making our (now) annual trip to visit family in CT/NY and that will last just over a week. My parents are getting in the act this year -- they want to keep Daniel for a few days and do activities with him (without me or Rachel and Simon), and I plan on obliging. Details are still sketchy across the board on that trip, but we know it will be happening in mid-August. Then kindergarten starts on August 30.

Rachel's and Simon's summer schedule is actually quite easy. Their current school programs end on June 16 and a couple of weeks later will be starting ESY (Extended School Year). School for each of them is only half-day (as opposed to the full-day it is right now), but I have also signed them up for camps (through Simon's school) from 1-3 daily. Rachel will be bused from her school to the camp and Simon will already be there, so I don't even have to worry about getting them there. I am only responsible for picking them up. I hope they enjoy it. It'll make for full days during the summer, but they're used to it. And I really think they'll enjoy the experiences and will get a lot of the social opportunities. And, most importantly, THEY WILL FINALLY BE TOGETHER!!!!!!!

So, unlike last year, I think I'm ready for the summer. At least I hope I am.....

Thursday, May 20, 2010

A Haphazard Post

Well, there are a couple of things I want to say tonight, mainly because I want to capture the moments....

First, there's the update on the Potty Training of Rachel. School is only focusing on urine since there's very little they can do to train her releasing her BMs into the toilet -- they are more unpredictable and, honestly, harder to force into being without consequences. The thought for her is (as is the case with most kids), once they get used to being potty trained for urine and learn that an unclean pair of underwear (or Pull-Up if still needed) is extremely uncomfortable, they eventually get the idea. And I remember when training Daniel, BMs were MUCH slower to train then urine.

Her progress with this, just like everything else, is remarkable. The first day, she had several accidents, all in the morning -- by the afternoon, she started to get the idea of what she was supposed to do (as I mentioned in an earlier post). The second day, she also had several accidents, but her teacher said they were all in quick succession, almost as though she didn't understand the concept of emptying her bladder. But once that was past, NOTHING. Yesterday, she only had 2 accidents, both early. But today, she had NO URINE ACCIDENTS AT ALL while she was at school. Per instructions provided by the school, we are doing very little at home right now. That will likely be changing soon. We are taking her to the toilet when she requests it (as quickly as possible) and we will continue doing at least that for however long is necessary. But both Kevin and I are so pleased how quickly she's taking to this words just can't describe it.

On a completely different note, I wanted to comment a change to our bedtime pattern. Some time ago, I mentioned the antics of my twins as they prepare to go to sleep in the evenings. Over the last week or so, things have been changing. I don't think we've discovered the new pattern yet -- I think they're still testing things out, but it's still a lot of fun to watch this change happening.

Simon decided a while ago that he shouldn't have to wait until I leave the room to climb into Rachel's bed. So, as soon as I give him his kisses and the rest, he jumps right into her bed. Rachel didn't seem to like this particular change, so she was trying to come up with HER way of doing things. Lately, instead of climbing into her bed after saying "Goodnight" to Kevin, she waits until Simon climbs into her bed, and then she climbs into HIS so she and I can say out "Goodnight"s. Simon, at first, didn't like this one bit. He's still not happy about it, but he's starting to recognize this compromise. But then, tonight they threw another curve ball at me as I finished singing our songs. Instead of just saying good night, they EACH got out of the other's bed and climbed into their own. Then we recited our final "Goodnight" phrases as I left the room.

After about 20 minutes and saying "Goodnight" to Daniel, they were both playing in Rachel's bed. Lately, at this stage, Rachel is usually in her bed talking or playing and Simon is off playing himself somewhere, usually climbing into the glider chair in their bedroom (for the record, our first added Goodnight Phrase [and always the last instruction given] was "NO CHAIR"). As long as there has been no unplanned naps, they are still usually both asleep relatively quickly (within 15 minutes of me coming downstairs).

I'm still moving Simon from Rachel's bed back to his own before going to sleep myself. But he almost always manages to get back into her bed before Kevin leaves for work in the morning.

Monday, May 17, 2010

No Turning Back

Well, today was the day. We started potty training Rachel. Well, that's actually not quite true. We've agreed that Rachel is ready for potty training and her TEACHERS are potty training Rachel. I went out and bought all the clothes (including allowing her to pick out her new panties [princesses and fairies (yes, we're a Disney family)]) and many changes of clothes and am prepared to be doing laundry every day (including today). I also bought her strawberry milk so they could start the fluid overload with a "special drink" (ensuring that she would NEED to go to the bathroom). Well, she came home wearing her 5th change of clothes today. But the notes received from the school said that she was 50% successful -- most of the clothes changes were in the morning before she understood what was expected of her. And she was SO happy and proud when she came off the bus today. She is DEFINITELY ready for this.

So, it looks like we will have a daytime-trained little girl in just a little while (we hope). We'll have to see what tomorrow will bring, but for the last week or so, she's OBSESSED with the "potty" and really wants to explore this path. So, we're letting her do it. I strongly doubt she's ready to consider nighttime training and am actually dreading when that time comes -- right now she sleeps with a gate on her door since she and Simon share a room and Simon tends to wake and wander at night. But we'll deal with that when the time comes.

So, this house has returned to the world of "potty talk" -- something we haven't had to deal with (much) for the last 18 months or so. I suspect this change will last for quite a while. But it's worth it if it leads to one fewer kid in diapers!!!!!

Thursday, May 13, 2010

A Less Than Stellar Moment

Today has been a day. Everything started out so well. Rachel had the day off from school. Simon and Daniel were going about their normal business. Rachel and I went shopping for "potty training" and then went to MCITP to visit with her former teachers. We had such a fun morning.

The day was going so well. Then 5:00 happened.

Rachel (with Simon) climbed behind the couch in the basement. It's an activity that they've taken to doing over the last couple of months. It's become "their space" (for the record, it's Daniel's space when they're not home). And in general, I let them do it. But Daniel decided to "help" Rachel climb out. Before I could get over there to stop him, she started to scream. The screaming didn't stop until nearly 6 (except she fell asleep from exhaustion for about 15 minutes in the middle). I was just waiting for Kevin to get home from work and I was going to take her to the ER, having suspected she had dislocated her shoulder (again). Then, she started clapping while she was watching Jack's Big Music Show and then the crying stopped. Like she did before her IEP meeting, I suspect she popped it back in herself, by accident.

Hearing your child scream in pain just rips your heart out and makes you feel so inadequate when you don't know what to do to stop it from happening. This has now happened to her 3 times in the last 10 months. I hope we're finally done with it all.

Tuesday, May 11, 2010

Things Happen in Bunches

Wow -- I've been posting a lot lately. There are times where I feel like I have to work to come up with things to say so I'm updating this weekly (which is my target) and there are times where there is just so much to say I can't say it fast enough. Right now, we seem to be in one of those times.

I talked yesterday about Rachel being ready for Potty Training. Well, we have another update on that front. I received an email from her teacher this morning -- while they were changing her diaper, she announced "Go Potty" and then pee-ed on the floor before they could get her on the toilet. She's definitely ready. So, on Monday morning, we're going to begin training her. This will give her a month before school ends. And we will review the Drs. Foxx and Azrin's technique over the weekend, so we can continue reinforcing things at home. Her teacher says it typically takes about 2 weeks for the behavior to truly "take", but they like to leave a month to allow for continuing reinforcement. So, ideally, in 2 weeks or so, Rachel will be daytime potty trained and we will wait until Simon is ready.

But there was another event that happened this week. A couple of months ago, I "volunteered" to participate in a project to create a video for caregivers of individuals with autism. I figured this would be an interesting project and I probably can provide a relatively unique perspective because of the "twin" perspective. But when I volunteered, I didn't realize how big of project this really is. The intention is that this will be distributed nationally. And it was being filmed by truly professional film-makers. It was a bit nerve-wrecking -- yesterday, I walked into my basement and there was all this equipment and wires and microphones and all other types of equipment all over the place. It was definitely an experience, and I hope I made a good contribution. I will get to review my part of it before the final version is made, which is appreciated, and I will have to give my approval at that time. And I should get a copy of the finished product as well. I hope I was able to make a positive difference.

I also arranged for the kids to participate in summer camps during this last week. They will all be going through July and into August and hopefully, will enjoy their experiences. Time will tell.

So, hopefully things are going to start settling down. I think I need a break.

Monday, May 10, 2010

A New Development

A new chapter has begun in our household -- we have entered the world of Potty Training an Autistic Child.

We learned a couple of weeks ago (both from her teachers and from our own observations) that Rachel is showing some early signs of being ready for potty training. But the school isn't planning on moving forward with it until the start of the next school year because we are getting close to the end of the school year and the time away from school will potentially cause issues (but the teacher informed me that they use techniques developed by Drs. Foxx and Azrin [] should we want to proceed on our own). We haven't gone THAT far, but we will grab opportunities when they present themselves.

Well, last night, we were giving the kids "naked time" prior to dressing them for bed. This is something we used to do with Daniel, before HE was trained and it was a time that he thoroughly enjoyed, and we thought Rachel and Simon would like it too. Rachel squatted down and her Dad and I looked at each other and said, POTTY, and Kevin brought her to the bathroom. She would willingly sit on the toilet, but only for brief periods (20-30 seconds, tops). But she clearly needed to do something. Then Kevin heard the "tinkle" and the "plop" and we celebrated her success. This didn't stop her from being proud of the fact that she can make "water" on the carpet, but it was definitely a step in the right direction.

Tonight, after her bath, Rachel once again took that squat position and I asked her if she needed to go "potty". Tonight, she jumped up and ran into the bathroom shouting "Go Potty!!!!". Since I was busy dressing Simon, once again, Kevin went into the bathroom and again heard the tinkle. We are definitely in the early stages. She doesn't anticipate and I don't think she's truly "ready", but I will soon be looking up this technique and we will probably be starting over the next few weeks.

Thursday, May 6, 2010

Tired.....Oh, So Tired

I thought this was done and over with. Since January and the twins starting their new schools, sleeping has been so much better around here. Then things changed.....

.....and it's not them (mostly). It's me. I've been waking up waaay to early (in the neighborhood of 4 or 4:30am) and have been unable to get back to sleep. Then, there's no time to go back to bed until after 10:30 and it takes 20-30 minutes to fall asleep. Then I'm up again at 4.

That's just not enough sleep, and it's starting to take it's toll. My patience is shot and I'm always finding myself doing a silent 10-count to prevent myself from saying or doing something that I'll later regret. And I'm having the hardest time staying awake in the afternoon after they get home from school. You'd think that would translate to being able to fall asleep at night, but, of course it doesn't.

Am I more stressed out about Simon than I realize? Am I worried about Daniel starting kindergarten? Am I overly-concerned about Rachel's recent sudden outbursts? Am I fretting about doing a good job taking care of Domino? Is there something else running through my mind that won't allow me to settle down?

Who knows.....but to paraphrase a friend's Facebook Status, "Sleep....Oh, where have you gone?"

Tuesday, May 4, 2010

My New Routine

Yesterday was our MPAC home visit for Simon -- we were trying to determine how to make Simon's progress in school translate to home and other locations. Overall, the visit went well. Another bit of proof that I've been lazy. You would think that now that I'm not CONSTANTLY being pulled in 3 different directions for the 3 kids, I'd have the energy to deal with things when they came up -- especially since I can often focus on one kid at a time, at least for part of the time. But Simon has, yet again, gotten lost in the shuffle.

Simon needs direct stimulation. I've been letting him relax a bit when he gets home from school -- he works so hard there and the directed tasks are exhausting for everyone -- especially for him. But letting him take it easy isn't the right thing to do. So, starting today (well, tomorrow I suppose [have to take Daniel to the doctor since he was sent home from school which will take that available time]), when Simon comes home from school, we're going to be a bit more regimented until we head upstairs to wait for Rachel to come home. I can give him "time off" after Rachel gets home (and finishes her snack) so I can continue this work with her. I haven't been doing it for her either, but she hasn't seemed to need it as much. But, if it will help Simon, I'm sure it will help her too, and after she gets home, it will be her turn. And Daniel will still have my focused attention from the time he gets home until Simon gets home.

Hopefully, this will work for everyone. My time is the morning. Not long ago, I didn't even have that. Mornings are enough for me. Yes, they are. And as I keep saying it, I'll realize it's true.....

Saturday, May 1, 2010

It's Laurie Berkner Time!!!!!!

The day finally arrived -- the day we were going to the Laurie Berkner Concert. We had been preparing for this since mid-March. I'd been showing YouTube videos to the kids of the band performing on stage as well as the video provided directly by Two Tomatoes Records, LLC. We knew the set list. We practiced the songs. We (continued) watching Jack's Big Music Show on NickJr, and I pointed out every time we saw the Laurie Berkner Band, letting Simon and Rachel know that we were going to see them perform soon. And, when I ordered the tickets, I made sure we had an aisle seat so we could get up and walk around if it was necessary (and we knew it would be at some point during the show). All that led to today.

Was all that preparation worth ANYTHING?

Let me start by saying the one thing that we really didn't prepare anyone for was the heat. It was over 90 degrees at the outdoor venue of Pier 6 Pavilion in Baltimore and quite humid as well. Despite everyone arriving at the concert dressed for the warm weather, it was HOT (which doesn't help matters)!!!!!!

Daniel arrived at the show so excited and full of anticipation. His interest in the Laurie Berkner Band is starting to wane just a bit, but still, seeing them performing live makes him remember how much he really DOES love her music. And he made a friend of the little boy sitting next to him, and overall, had a wonderful time.

Rachel was also looking forward to it all. She was excited to get to her seat (but wasn't anxious to settle there). But she was ready for it all. And she remembered the video sent by the band and knew the order of the first 3 songs and was eagerly anticipating them all. And, throughout the concert, she really did behave as well as could be expected -- she had her "bored" moments, but overall was captivated by what she saw and heard and was genuinely happy to be there.

Simon seemed to recognize that he was in a place where he would see a show. He really has a remarkable memory and for some things (but only ones that I don't want him too) is really really good at generalizing things (like recognizing that, despite never being at this particular place, it was clearly a place to watch a show). He was fine until the band was about to come on stage. Now, normally, he reacts to the dimming of the lights, but that wasn't the case for this performance, since it was an outdoor concert. But the noise of the microphones were clearly louder than what he wanted to hear (despite TRYING to prepare him for it all) and he immediately began to get upset. The first song the band sung was "Victor Vito", which is definitely one of his most favorite songs. I was hoping that if I could get him into the performance with that song, we'd be golden. But his hands were covering his ears and he refused to stop screaming, even for Victor Vito. After a couple of songs, I took advantage of being on the aisle and moved INTO the aisle and started trying to get him to dance to the music. No go. So, eventually, I brought him over to the side, hoping maybe away from the crowd he'd do a bit better. Again, No Go.

That's when Kevin came to the rescue. He had Rachel on her leash (Simon was on his) and we switched. I went back to our seats and left Simon with his Dad. They walked all around the pavilion, and as they got closer to the water, Simon settled down and took his hands off of his ears. He was finally able to begin enjoying the concert. He spent most of the concert walking around and was only in his seat for rare brief periods, but he was able to hear the songs and even dance to some of his favorites that were performed in the latter part of the performance.

Then, after it was over, we got to go backstage to meet the band. Rachel was so hot and tired by this time, she really couldn't enjoy the experience and just lay down on the floor (slept for the whole hour+ ride home once we got back to the car). And Simon refused to even look at the band members. But they did make the attempt to engage him, which I so appreciated. Daniel was thrilled to be there, and all 3 kids left with an autographed postcard by 3 of the 4 band members, including Laurie herself. And I had the opportunity to thank her for how much joy my kids experience through her music and also thank her for all the help her organization provided me to try to prepare Simon for the show.

So, to answer the original question, was all the preparation worth it, I guess the answer is yes. 6 weeks ago, I had to leave a show approximately halfway through because Simon was just that miserable. This time, even if I was there alone and didn't have Kevin's support, I think we could have made it. But it wasn't as good as I hoped for. Not even close. But I know that Simon made it through a show. And he can do it again. Just not for a long LONG time.