Monday, August 30, 2010

"It's The Most Wonderful Time Of The Year....."

Today was supposed to be a great day for all of us. We got up early, and everyone was excited about school starting again. Daniel was starting kindergarten. Simon was going to a new classroom (same program). And Rachel was going back to her much-missed routine. I would get my "Me Time" back. And Domino would get some undivided attention, which she clearly missed.

Everything was going so well, too. The kids ate breakfast and lunches were all packed. Shoes were lined up by the door. And, even though we knew we had a timing issue issue with Simon's bus and Daniel's school, we were ready. Then, at just after 8:00, I took Rachel outside to wait for her bus. I left the boys inside the house -- Daniel was playing on the computer -- Simon was watching Sprout's Wiggly Waffle, specifically Thomas and Friends to be followed by The Wiggles. I know -- leaving the TV to watch a 3.5 year old isn't wise, but he won't leave during those 2 shows.

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We're sitting out there, waiting for the bus. And waiting. And waiting. I know that it's the first day and that things are potentially running late. But at this point the bus is 15 minutes late (and the boys have been inside by themselves MUCH longer than I had planned). So, I call the bus depot. They inform me that Rachel isn't scheduled to be in school until September 7.


So, from then on things just fell apart. We had to get Simon outside to wait for the bus. But while I was getting his diaper changed and putting on his shoes, Rachel took off her shoes and socks and wasn't willing to have me put them back on. Daniel, in the meantime, is INSISTING that we walk down the hill to his school. I'll admit it -- I lost my temper a bit and yelled briefly. But, quickly, I got my frustration under control and got everyone outside to wait for Simon's bus. Daniel was "Look-Out". Simon's bus was about 8 minutes late (the same time Daniel is supposed to be at school) but it arrived and Simon climbed on. He warily climbed on and into his seat when he recognized the same driver as last year. All things considered, he did really well and the bus left just in time for the late bell at Daniel's school.

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So, I put Rachel in the wagon and we RUSHED down the hill. As we walked into the school, about 4 teachers/paras gave me the argument that the late bell is at 8:50. I told each of them that we knew we were going to have this issue, his teacher and the office had BOTH been informed, and we will be resolving it as quickly as possible (like next week). So, one of the paras took Daniel off to his class (which had already started), but they did let me get that final picture.


The rest of the week will be better. I now know that Rachel is home this week. And as crazy as today was, we have established a slight routine. And, for a change, I have Rachel without the other kids, and she has me to herself. It's going to be a fun week. And then, come next Tuesday, "Me Time" will return.

Monday, August 23, 2010

Preparation is Everything

It's only 3 words. You'd think that it'd be easy to remember. You'd think that by now I'd be used to it. This is the advice I give to EVERYONE when they tell me that they're just learning about someone being on the spectrum. So, why do I always seem to forget?

All right -- I don't need to create a social story for every SINGLE situation (even though it would probably help). But the things that can set off one or both of my ASD kids can be baffling.

Take this weekend for example. Like (seemingly) all Moms in the DC metro area, I am making sure my kids are ready for the first day of school by making sure they have an adequate wardrobe and piles of accessories. Recently, I noticed that Simon's crocs (which he had been wearing all summer) are getting harder and harder to get on his foot. And he has become very uncomfortable in them, pulling them off whenever humanly possible. So, yes, his shoes are too small (if the crocs are too small, then so are his sneakers). So, on Sunday morning, we all head over to the local shopping mall to get him (and maybe Daniel too, if there's a good sale) some new sneakers (Rachel's sneakers are relatively new and fit just fine).

We arrive at the mall shortly after it opens and Simon and I make a bee-line for Stride Rite (they seem to be the only ones who know how to fit shoes for my kids). And I happily notice they have an ongoing sale so we can take care of Daniel's sneakers as well. I sign us in and take Simon to the boys' sneakers and start trying to find a pair that (1) doesn't need to be tied and (2) I like (and think that Simon would too). Simon is looking pensive -- I don't think he wants to be there -- the store is getting crowded and there are shoes around. But do I notice the signs? Not really. At least I'm ignoring them. He NEEDS these sneakers. I have no choice.

About 5 minutes later, our name gets called and I bring over the sneakers that I think will work. I inform the sales person of the size that I estimate Simon's feet to be and she prepares to measure his foot. Simon's body is stiffening. I warn her that he's autistic and she immediately changes demeanor -- she's suddenly moving much slower and is very careful how she approaches him (nice to have someone who knows how, in general, to deal with kids who are uncomfortable in the store). But we need to measure his foot. I take off his crocs. Normally, this is a moment of jubilation. But in the store, he starts to SCREAM. He's kicking as hard as he can and tries to get away. The sales person brought him everything that was available -- stickers, socks (something soft to hold), even some paper and a pen for him to draw on. Nope. No go. So, she took my word on the potential size and brought out that one, one above and one below.

I pull Simon's socks out of my backpack and start to put them on him. He's gone. He wants out of there and he doesn't want to try on shoes. He's making such a scene that people are standing as far back as the walls of the store will allow. I don't even WANT to know what they're thinking -- bad/abusive parent, problem child, or worse -- I just go about doing what I have to do to get those socks on his feet so when the shoes are available, we'll have no added delays. (note: this is one of those times that I wish I had a label on him that everyone could see that says he's autistic to just avoid the stares and glares) She brings out the shoes and the first pair we're trying to force on his feet. The second pair slips on easily, but appear to be snug. Good! Job DONE!!!!!! Take them off, put on the crocs (over the socks) and take him to the play area.

I then bring Daniel into the store and he's done in just a few minutes without incident. The difference between an ASD child and a non-ASD child.

I KNEW we were going shoe shopping over the weekend. I was even pretty certain that we'd be going on Sunday. I also knew it would likely be crowded at the store because it's a week before the start of the school year. All I had to do was periodically during the week pull out his socks and get him used to wearing them a bit again. Bring the sneakers out of the laundry room and remind him that he has shoes OTHER THAN his Thomas the Tank Engine crocs. That probably would have been enough to get us started. But I didn't. I forgot my own advice, AGAIN. And another "normal" activity became an ordeal.

So, once again, I need to remember, PREPARATION IS EVERYTHING!!!!!!!!!!

Saturday, August 21, 2010

Things, They Are A-Changin'

Changes have been happening here. I'm not really sure when this started -- I just know it's been happening for a while -- it's just become very obvious over the last week or so, and it's becoming a more and more common occurrence. FIGHTING.

Shortly after learning I was pregnant with twins, I frequently both read and posted to an online bulletin board/support system for Moms of Multiples and became very dependent on the experience of these other women. I'm still in touch with several of them, but using other means (Facebook, mainly). One of the things I remember them talking about is the relationships between their twin sets -- how they are both as close as it was possible to be and, at the same time, nearly mortal enemies. This general behavior is something I had been (in a weird way) looking forward to. Well, not the mortal enemies part, but that closeness does imply disagreements as well.

It's taken 3.5 years, but the fights have now begun. And they are VICIOUS. If I don't watch closely, a desire for a turn will escalate in (literally) 2 seconds to include hair pulling, hitting, kicking and biting. They both are guilty of initiating these behaviors. And it is completely unpredictable when they will appear. Rachel is very sneaky about it actually. She will sneak a hit and then become a "helpless victim" -- basically playing the "girl card" as Kevin puts it.

On the plus side, this is an indication that they recognize each other and are starting to assert their autonomy. And it's "NORMAL". They now are looking to play games with each other (usually turn-taking type activities), but they won't sit down and solve a puzzle together or share a book. In fact, that's the type of activity that leads to these altercations.

I just wish that we could have the positives without the consequences. This is unrealistic I know, and I'm not really complaining. The positives here greatly outweigh the consequences. I know they can learn how to behave and how to get past these phases. Yes, there will be some blows along the way. But when we decided to become parents to multiple children (much less of multiples), we knew that we'd be dealing with conflicts between siblings, and this was long before "autism" entered our daily life. It took 3.5 years, but it looks like we are now facing this new phase of our children's development.

Wednesday, August 18, 2010

Gotta Love Scheduling.....

.....all right -- forgive this vent, but this is something I just need to get off my chest, and this has become the place where I do that lately.

Starting on August 30, I have 3 children attending public schools. These children are 21 months 1 day apart (minus one and two minutes) oldest to youngest, yet they go to 3 different schools. This is no longer a real problem per se...I still would like to see the twins together, but I know that's not the right thing for now.

The problem has now become getting them all TO school. We live less than 0.5 miles from our home elementary school and Daniel is classified as a "walker". The other 2 take the bus (and different buses). I was looking forward to the start of the school year and walking Daniel to school. Then we got the letters from the transportation office.

First, let me start by saying, these letters arrived while the kids and I were out of town. Kevin opened them up (as they were addressed to him as well) and relayed this information to me over the phone,

Now, when the twins turned 3, we had some issues with the length of Rachel's bus ride -- they had her on the bus for 70 minutes to get to a school located a 20 minute drive away. I had MANY phone conversations with the bus depot and the autism office, emails flew in all directions, and we finally got that resolved after a few weeks. So, when Kevin told me that Rachel's bus ride was only going to be about 30 minutes, I WAS THRILLED!!!!!!!!! Then, he dropped the bomb.

First, he informed me that Simon's bus would be arriving a little later than we were accustomed to (shortly before 8:40). Then he dropped the real bomb -- Daniel had to be at school at 8:45. If he isn't there by 8:50, he's "tardy" and will have to deal with the consequences of it all (including having to check in the office every day that he's late). Simon's bus was often late last year because of traffic on the major road approaching our development (rarely more than 5 minutes). And we need to budget 10 minutes to walk to Daniel's school. Doing the math, we're in trouble.

I finally had a few minutes yesterday to contact the involved parties to see if I can work something out. I started with the Transportation Office to determine if they could change the route or even change the location of the pick-up (closer to Daniel's school), or maybe some other option that I hadn't thought of. Their answer was a very clear "NO". And to make matters more complicated on the timing aspect, he is now the last stop on his route (was previously the 2nd stop). This INCREASES the likelihood of the bus being late.

Then I called Daniel's school to find out options on that end. They will not permit me to drop him off prior to 8:30 for before school care. There is a private day care with whom I may be able to work something out, and I'll contact them in the next few days. But I can't drop him off with them until after Rachel's bus arrives. And I still have to be back here no less than 5 minutes prior to the scheduled arrival of Simon's bus.

So, once again, we have scheduling issues. I would have thought that we'd be past that by now, but I suppose as long as they're in different schools, the potential exists.

Still -- 7 more business days before school starts. The countdown is in full force.

Tuesday, August 17, 2010

The danger of a diagnosis

When you have a diagnosis, you are faced with a difficult situation on occasion that may not be obvious to others. I mean, everyone can tell that, because of an autism diagnosis, one can expect tantrums, communication difficulties, sensory processing issues, and being uncomfortable in social situations. But what about the specific situations are true in the "normal" or "neurotypical" population as well?

Every once in a while, we have to ask ourselves if we are dealing with an "autistic behavior" or if we are just dealing with a 3 year old. In many cases, they seem to be one and the same thing (well, in our case, they ARE the same thing).

Tonight was an example. Rachel has been giving us a lot of trouble at dinnertime for as long as I can remember now. She refuses to eat most nights, unless we pick the exact food she wants on that night. And there are only 2-3 meals she'll eat, so that's pretty pathetic.

Tonight's dinner was chicken nuggets. This is NOT one of the things she'll eat, but we do put it to her anyway when it comes up in the rotation. We've been working with her to make contact with the chicken (or other food item) when they are served to her. Touching it is the big thing. She will now touch almost any food we give her. Kissing it is the next step. We've gotten there with the chicken. We have been determined to get her to eat her food for a while, and if she doesn't eat her dinner, there's no dessert. But that hasn't been doing much good. Tonight, we went a bit further. Rachel did eventually eat 2 pieces (very small) of chicken, but we had to force her (literally). One of us would get her to open her mouth and we would shove in the piece of meat. On the good side, she didn't do anything to spit it out, but she did scream. And she did get the reward -- 2 pieces of chicken led to 2 M&Ms (and her fruit of choice [banana]).

So, here's the question. Are we having this problem because she's autistic, or are we having this problem because she's a 3-year old and quite stubborn (just like her mother)? I have made a request for an IEP meeting for her when school starts to update her annual goals (they are really not quite right any more as she's advanced, per her ESY teacher) and I'm going to try to add working with her on new foods, at least getting her to try them. If the problem is autism, it will hopefully help in this matter. If it's a stubborn 3-year old, we'll just have to deal.

Thursday, August 12, 2010

What To Say...

.....I have wanted to post here for a few days, but just haven't had the opportunity. There are now several things I want to talk about I'm not quite sure where to start....

I guess I have to choose -- I suppose we'll talk about our trip last week. Overall, the trip went quite well. I wish I would have gotten more of a chance to sleep, but Simon decided that sleeping wasn't something that Mommy needs, and Rachel tended to agree. I saw Daniel surprisingly little (or maybe not so much) all week -- his older and fun cousins were around and they entertained him almost every moment Daniel could connive them into it (they are 13 and 11). And then, Daniel was given the opportunity to talk about starting kindergarten later this month.

Rachel and Simon both got to spend time with their grandparents, aunt, uncle and cousins; something that rarely happens. We only commit to seeing aunt, uncle and cousins twice a year (summer and winter holidays) and we don't see grandparents too much more than that. They haven't seen them since BEFORE their birthday and they started their new programs. It was nice to see their reactions to how much they've changed in that time. Neither one of them are pulling the books off the shelves any more. They would STOP when told. They were PLAYING with toys. We had very few true breakdowns (yes, there were some, but far fewer than any other visit to date).

Rachel also had an amazing moment. She DESPERATELY needed a haircut so I brought her to the local shopping mall. They didn't have a place that specialized in kid's haircuts which had me concerned, but there was a shop that had someONE who took care of the kids who was available. I told her that Rachel was autistic and the haircut went smoothly. But that wasn't the amazing part. We had a 40 minute wait for her haircut after we arrived, so I took her to a play area for that time. There were several other kids there, including a couple of little girls (I'd guess) about a year older than her. One of them asked her to play with them (they were playing "Monsters"). Rachel didn't directly answer, but the rest of the time we were there (about 15 minutes), she was chasing these other 2 girls around the play area. This was clearly what the other girls had in mind. I'm still not 100% sure Rachel fully understood this cooperative play she was engaged in, but she was having a BLAST!!!!! And it was so nice to see her playing in an age appropriate manner.

Simon also had a moment. We were driving home and, as usual, we had the video iPod going for a good part of the drive. We were listening to a special that had aired on Noggin (now NickJr) last year called "Let's Hear It For The Laurie Berkner Band" (can't wait to actually get a clean copy when the DVD comes out next month) and he started singing (responsively) along with the music. Kevin was able to record a snip-it of his performance.

Overall, it was a good week and a nice visit with the family. We have about 3 weeks before school starts (August 30) with minimal activities planned. Hopefully, the rest of the summer will go smoothly.

Wednesday, August 4, 2010

Interesting Observation

Daniel joined us at my in-laws' house yesterday. When we arrived at my in-laws' house on Sunday, Rachel was very animated. She was talkative. She couldn't get enough of her new environment. Today, something suddenly changed. She was very happy to see Daniel and from the moment he arrived yesterday afternoon through breakfast this morning she kept saying "Hi Daniel" or "Thank You Daniel". But then she seemed to become much quieter. She didn't seek out attention quite as much. She wanted less to do with any of us. She even had several potty-related accidents in a very short time window (she hasn't had even one of these in nearly 3 weeks).

Was this change related to Daniel's arrival and having to share the attention with him as well as her twin (who she can definitely dominate with minimal effort)? Or is she under the weather in some way (her cousins stayed home with a very bad cold today)? Or is this something different? I don't know if I'll ever fully know.

Rachel really does love to play with Daniel. But she also shies away from him sometimes (Daniel can be a bit intense). She did seem to have fun today -- the 3 kids played together in an inflatable pool and they all had blast. Rachel kept jumping in and out of the pool, as Daniel splashed her but she always reapproached the pool happily with minimal to no prompting. She also was laughing at some of these splashes at times.

I've never really noticed this behavior from her before, and it's something I'm going to start watching for from now on. We've always theorized that the reason the twins don't talk much is because they don't get the chance, and when this journey began, that was always an excuse that we fell back on -- Daniel tends to take over any situation whenever he sees the opportunity.

We'll see if this continues.....

Monday, August 2, 2010

Change Of Settings

Camps are done. Our routine is changing, again. Our world is being shaken. Just as is the case for any family. How will we react?

Well, in explanation, we left a couple of days ago for our annual trip to visit the grandparents. But this year, we did things a little differently. We started by visiting my parents for a night, and leaving Daniel in their care. Other than when I was in the hospital, I had never been away from Daniel at night. But my parents really wanted to spend quality time with him, he wanted to spend the time with them, and it's good for them to get to know each other a bit better. We left him there on Sunday and he'll be meeting up with me and the twins tomorrow (Tuesday). I talked to him on the phone the last 2 nights, and he's having a BLAST, so I'm really glad things worked out so well and that he's enjoying himself (and not driving my parents too crazy). I'm also grateful that the weather forecast hasn't held true and they've had nice weather. Daniel stuck inside in an unfamiliar place with semi-unfamiliar people can be a VERY dangerous thing, for everyone.

Other than that, things have gone in similar fashion to the last couple of years. We headed to Kevin's parents' house for the rest of the week. After being here for about 24 hours, Kevin got on a train to head back home (he'll be back on Saturday). Kinda strange -- me being here, with the kids, but not with Kevin. But we've done this twice before, and it does work. And each trip, we've learned more. We've now been here for 2 days (well, are experiencing the 2nd night) and bedtime was actually easy. Not quite like at home since we can't just leave them in the room like we do there, but within about 20 minutes, they were both asleep. It's nice to spend some time with the family, and it's really nice for the kids to spend this time with their extended family. They deserve to get to know them all.

It's also interesting to see things from someone else's perspective. My in-laws haven't spent any time with Rachel or Simon since the start of the year and there have been so many changes in both of them. Seeing them every day, I always get so frustrated at Simon's apparent lack of progress, but when someone else can see so much progress it makes me feel better about some things. I still worry, but now I'm able to see more of his advancements.

But we'll be here for another week or so and then we'll head home. Then we'll have yet another routine (that we have to discover) until August 30, when school begins again (for all 3 kids). We'll be working on finding activities for those 3 weeks or so, I'm sure....