Schedules and Routines

I know that all children thrive on schedules and routines and one of the first thing parents do when a baby is born is start working on establishing a schedule and a routine. But when does that need become crucial? abnormal? absolute? And when is that a problem?

We have several routines around here. We have a morning routine (with modifications for the weekends when Kevin is home versus when he's not). We have a dinner-time routine. We have a bedtime routine. We even have a pick-the-kids-up-from-school routine. In a "normal" household consisting of 2 parents, 3 children, and a dog, I would expect something similar. But we are different. Our "routines" are absolute. There can be little-to-no deviations. Even the slightest things can be catastrophic. And when I say the "slightest thing", I mean the STUPIDEST thing.

The best example of this is our "Getting the Big Boys From School Routine". A typical afternoon jaunt (on a driving day [not worth talking about walking right now because we rarely do that as it's getting colder]) goes like this -- after Simon gets home from school (most days [don't ask how we distinguish Mondays from the rest of the week -- that would take another post]), he goes straight into the car and we head down the hill to pick up Daniel and a neighbor, also in kindergarten. We have to park the car in the SAME spot every day. We have to walk the same path to get to the kindergarten door, including walking AROUND a particular tree. We have to jump across the driveway for the elementary school. And we must avoid ALL marked crosswalks (the closest I can come is I can walk the outer boundary line and Simon will hold my hand on the outside of the crosswalk and will scream as we cross the street -- trying to explain to the 4th grader patrols that my 3 year old cannot walk in the crosswalk is finally starting to become unnecessary). I have to make sure Daniel gets in the car before Simon and the back door has to be closed before Simon will climb into his seat. Simon then has to be given a book to "read" before I strap him in, and then I have to walk around the car to be sure that the other boy is properly strapped in. Then I drop off our neighbor and bring my kids home and another routine begins.

Notice the detail in that last paragraph. Nothing can deviate. It MUST be that way. If we do change anything -- if I miss our preferred parking spot or I decide to have a too-lengthy conversation with another Mom picking up her kids, we are facing a meltdown. And dealing with Simon and a meltdown is definitely something to be avoided. He's not a small child. He's not a light child. With Rachel, I can pick her up, swing her over my shoulder and do what I have to do, should it come to that. Even when she's fighting it, I can usually manage it with minimal difficulty. For Simon, just lifting him is a challenge under ideal conditions. During a tantrum, it's nearly impossible. And if I was to do it in public, people would probably consider calling Protective Services against me. It's just easier to avoid that situation.

Simon is not the only one who needs routine. Rachel is, in some ways, even worse. With Simon, for most things, he will just freeze where he is until you do what is expected. Rachel, when she "loses it", getting her back takes a very long time and you have to let things run their course. But many of her "routines" are more comical and/or useful. She has to come running if you make certain sounds. She can't go to sleep until she's taken that last "potty" run, even if she just went to the bathroom 3 minutes before. And nothing requires that level of detail as I specified in the routine above.

Now, Daniel always thrived on routine, and he's clearly NOT autistic. But, to be brutally honest, at this point I can't remember, when he was 2 months shy of 4 years old, if routines were changed or not followed at all how he would react. He wouldn't throw a tantrum, but he also had a much larger vocabulary and was much more effective at expressing himself than his brother or sister. But did it throw him as badly as it does his ASD siblings? I honestly just can't remember.

Another one of those times that I have to wonder what is autism and what is just having 3 year olds......

Decision's Made

Second meeting is done. We're done for now. Both of my kids are staying put.

Yup.....after all my waffling about what I should do for Simon, I decided not to fight this. Something is happening with him right now. Something is trying to break out. I don't know what. But it's there -- just below the surface and it's struggling to break free. We have already made one change -- we started these music classes on Saturday mornings. We don't want to make any other changes right now. In a bit, we'll see what this is that's coming out of Simon. Is it a full breakthrough or just a small step? But we need to give this a chance.

It was nice to sit there and listen to all that Simon's accomplished since January 12 when he started this program. He's become much more receptive to group activities (which was already one of his strengths). He's starting to show interest in general play activities. I was able to talk about some of my specific concerns, including his aversions to noise and his unwillingness to try new things (used the music class as an example). But the truth is, 6 months ago we wouldn't have made it through the class -- it would have been a bad experience for him the first few times he went and then, perhaps, he'd be ready to accept it. Now, it was just the first 10 minutes. I expect problems when we go on Saturday, but now we're building on a success.

One of his "objectives" though was something I had to ask about -- it read that Simon would sit on the toilet. I didn't expect them to have a fully "potty training" objective -- they want to see success and that objective is much more difficult to happen then others. But I saw it there and asked about it -- have they been successful at getting him to "sit"on the toilet? They told me that he will, but he's not happy about it. They can usually get him for a 10 count (speed varies depending on his cooperativeness) and then he can get up. But they aren't trying to "train" him right now -- just that early step. Funnily enough, on my drive home, his teacher calls me to tell me that he "pooped" in the toilet!!!! When I asked if she felt he was ready for training, she definitely implied that this should still be considered almost a "fluke", but a success nonetheless. So, perhaps I'll be able to stop ordering diapers soon......or perhaps not.....

Was the right decision made? For today, yes. For next week or next month, well, we'll worry about it next week or next month. I always have the option of calling for another meeting and bringing this up for discussion again. I just need to see where this is going right now before chancing such a big change as his placement. Hopefully, it is the right thing and we won't have to worry about this until next year.

Simon's Activity

I guess this isn't a fully true statement, but I like it anyway. Simon has started piano lessons.

Following an email from a friend from the MOMS Club I'm involved with, I contacted a school called The Academy of Fine Arts (about 8 miles from my house, per GPS). They have a class called "Music and Me". Given the books that they use for the class, it's not just this one location, but it's the spot we found. It's designed (it seems) to be the first stage in a long sequence of beginning piano lessons. The class started in September, but kids join in throughout the semester, and it goes until the end of January. We've been looking for a good class, ideally with neurotypical kids, for Simon to join. In the past, he's taken gymnastics with his sister (but he's never enjoyed it) and this term we were giving him a break from that. But he needs SOMETHING. We've been looking at music classes. But all the ones I can find meet in the mornings during the week, when he's in school. That won't work for us.

But this one meets on Saturday mornings, at the same time as Rachel's gymnastics class. Daniel's done with baseball until mid-spring so Kevin is free to take one twin to an activity while I take the other to a second. So, we decided to try it out.

I took Simon to the music class and Kevin took Rachel to gymnastics. Because we were unfamiliar with the music school, we chose to take Daniel to Rachel's gym, which meant that Kevin had 2 kids and I had one. Translation -- Kevin took my car (with 3 car seats permanently installed across the middle row) and we transferred the "extra" car seat to Kevin's car and I took Simon. Simon almost NEVER travels in "the car" -- he always comes with me in "the truck". He DIDN'T want to get into that car. I won the fight and managed to get him strapped in. His hands went over his ears and he screamed. But the screaming was different. It was interspersed with singing (in an odd way, but I can't really describe how). But the hands remained covering his ears.

Getting there was a bit of challenge -- the school is kind of hidden away. That didn't improve Simon's mood at all. But we did arrive with a few minutes to spare. The screaming started again as we get out of the car and start walking into the building. People are staring, and I'm ignoring them. I'm used to this by now. This is a music class and I'm convinced that Simon will enjoy it if I can just get him in there and force him to hear what's happening around him. I introduce myself to the teacher while holding Simon and explain that I know he'll be fine once he allows himself to experience the class. We walk into the classroom and I try to find us a seat (at a piano) towards the back of the room (to minimize the distrubance), but the two pianos were already occupied. So, we sat at one piano closer to the front. I explained to the mother sitting next to me (at the piano furthest towards the back) that Simon was autistic and this was a new experience -- I honestly believed that once the class got going, he'd settle down and shouldn't be a disturbance. Fortunately, as soon as I mentioned he was autistic, she seemed to understand -- her older son is also on the spectrum and she understood what I was going through and why this class was so important. One worry eliminated.

The teacher started the class and pulled out the bells for the kids to sing their "Hello" song. Oh No!!!!! This is what starts Simon running to the corner at his gym class. I keep him at the piano and we don't get bells. I tell the teacher that we're holding off on that activity for right now, and she just continues on -- she understands that we're taking it slow. The kids start to play the bells. I'm thrilled that, despite him keeping those hands over his ears, the intensity of the screaming doesn't change. He's still not happy, but the bells aren't making it worse.

Then we start playing the piano. When Simon realized what we were doing, he started to relax. One hand left his ear (not both, just the one). We were playing "Do Re Mi" and (Rest). I took advantage of the uncovered ear and really hammed up the "Rest". He started to giggle. Good. He's settling down. But the other hand won't move. We keep going. "Do Re Mi and REST!!!" (with his one available hand held over his head). The giggle is becoming a laugh. Again. And again. And again. Then the class starts to demonstrate. We're waiting our turn. The second arm is no longer tight. Because we're new, Simon is the last one called. When it's his turn, "Do Re Mi and REST!!!!" he puts both hands over his head. I sit there and hold my breath, but give him a big HUG!

It's now time to leave the piano for circle time. Simon is running over to join the group (but making sure I'm coming with him). He participates completely with the activities they are doing at the white board (including some rhythm work and writing music notes on the board). He's really starting to get into it. The rest of the class goes well! I was right -- once he finally allowed himself to relax and be receptive to the new material, he really loves music.

So, we finally found our activity for Simon. I signed him up for the rest of the semester and we'll be going until late January. At that point, we'll sit down and figure out the best option for the spring. But once we start, we won't stop. Simon needs this. And it's just as important as Rachel's gymnastics, and Daniel's baseball and gymnastics. We'll figure out how to make it work.

Waking from a sleep....

I was originally writing this to publish last night, but we had such an amazing story about Rachel, I held this off for a day.....so we have another case of posts on consecutive nights.....

We all want to see our children excel and improve. For the longest time, we've been seeing so much of that in Rachel, but not so much in Simon. Then we've had the last few days. Seriously, Simon.....you had to pick NOW to start showing me how much you've been learning????? Less than a week before your IEP Meeting, when I was all set to ask about changing your placement? Are you TRYING to give me, your dear sweet mother (no laughing please), a nervous breakdown?????

It started this weekend -- he was stacking blocks. And not just building a simple tower with the same block shapes. He was actually CONSTRUCTING a tower. He would build it, it would fall down; he'd make some changes and build it up again, it may fall down; he'd do it again and, if necessary, he'd PUSH it down. It was "normal" play. He really didn't want anyone to play with him, but for right now, we'll take it!!!!!!

Also, he's starting to request things and activities. If he is getting tired and wants to get ready for bed, he'll say "Pajamas" and bring either me or Kevin (usually Kevin) his PJs to help get him dressed. Sometimes he wouldn't say the word, just simply bring them over. He's singing and dancing to Pajanimals and Wiggles songs as we go through our normal routine. And he's getting more receptive to the idea of "play"when Rachel comes over to him and says, "Come on, Simon!".

But this meeting is coming up in just a few days, and I have to decide what I'm going to do. I was going to tell them that I have serious doubts about his placement. Now I'm not sure that's the smartest thing for me to do. I do feel I need to bring up his placement and make it clear that I still have questions about which program MCPS can provide for him that will best suit his needs. But I'll do it more quietly than I was planning. I'm no longer convinced that we need to seriously consider making the change, but I'm also not convinced that he's where he should be. I want to hear what they have to say and hopefully they will be able to give me specific reasons WHY MPAC is the best program for him, or why the other programs will not address his needs. I took some time to review his draft IEP as well as his last report card this morning and they say he's "Acheived" his goals, but then there are identical ones on the new IEP.

There are still just too many inconsistencies. And I feel like I can never get a straight answer out of them (not that I've ever really had the nerve to ask or follow-up appropriately). This question shouldn't take everyone by surprise. I kind of implied I was thinking this back in May when I had a conference with several members of his team (one of which will likely be in the meeting). It's just been a while since they've heard me question it in person.

In other words, I'm not going to let myself be hot-headed. The question remains, "Can I succeed?".....

More Amazed Every Day

Rachel continues to leave me speechless. I had a parent/teacher conference with her classroom teacher this afternoon and when I left, I just couldn't believe this was the same child whom I was so resistant to enter an ABA therapy program with CSAAC 16 months ago. What was I thinking? I trusted those who were making the recommendation, yet I just couldn't bring myself to get behind it. But since we've started ABA, we went from having a lump of a child (an adorable lump, but still a morose child who rarely smiled or engaged anyone and excelled at throwing tantrums) to a happy energetic little girl who can't seem to get enough of the world around her.

I definitely get the feeling that her teacher is nearly as proud of her as I am. Her IEP meeting was about 3 weeks ago and they are starting to incorporate some of the changes that we planned, specifically working on placing her with a neurotypical Pre-K class to give her social opportunities with her peers and to teach her how to play with toys (an area that she is grossly deficient). They started bringing her to the Pre-K class this week and she actually spent some time there on Monday and Tuesday. Unfortunately, there are no opportunities for her to go back until next week (she was sick on Wednesday and Thursday/Friday there's no Pre-K due to half-day school days to allow for parent/teacher conferences), so they may have to take a step or two back when she returns. But the plan is to incorporate her into this class for 15 minutes/day for a while and slowly increase this to 1 hour/day.

The representative from the Autism Office wants to see her introduced with the Kindergarten classes as well, not only for the social interactions but for academic growth. They are working on this during the Kindergarten's specials (Gym is already done and they are considering music for Rachel [because she really enjoys the music classes]). Her teacher however (and I agree with her) feels that it's far more important to mainstream her with the Pre-K and hold off on Kindergarten. There are other ways to give Rachel the academic stimulation that she likely wants/needs without pressuring her being in a classroom that is more than she's ready for. The inclusion of some of the CAPP kids with the Kindergarten during the gym class is working well for Rachel. But if they are going to put her with the Kindergarten kids now, she's going to be doing "Kindergarten" for nearly 3 years. If that won't cause her to be bored by school, I'm not sure what will.

But she is just doing so well. And we are definitely on a path to make my dream of having her ready to enter a fully mainstreamed classroom for Kindergarten a reality and not just a pipe dream.

It's so nice to see things working so well for her.....

He Surprised Me.....

Simon's IEP meeting is approaching, and I'm starting to get comfortable with what I'm going to do (asking about changing his placement). Then today happens....

Yes, today (well, tonight) was enlightening. He was a different child. He was cooperative. He was helpful. He was interacting with his environment (not people so much). He "read" his book. He wasn't phased when his older brother "Surprise"d him (which will often lead to tantrum [which is why (I sometimes think) Daniel does it -- he is a brother after all]). When the time came to get into pajamas, Kevin asked him to bring over his PJs, and he picked up the small stack and brought it right to Kevin and even sort of helped Kevin get them on him. As we were watching The Wiggles (as part of our routine), he was dancing and singing along with the music. During his nighttime books, he was anticipating and pointing to the interesting aspects of the pictures. He quietly settled into bed after we said our "Good Nights".


I wish I wasn't just mesmerized watching him and thought to get my phone in camera mode (for the dancing) and get it recorded to share with the world, or to be able to look back on as time continues to pass. It was a treasured moment that we don't see too often from Simon.

Where did this child come from? Is he here to stay or was tonight a fluke? Is he learning these things at school or is he just happy with our routine? Should I ask about changing his placement, as I've been leaning towards, or keep my mouth shut next week?

Right now I'm just going to relax and enjoy the wonderful night we just had with him. Tomorrow is another day and I will go back to thinking about this -- it's too important to let this go. But tonight was a good night.

What's Next?

This post is about me. And not about me venting about the issues surrounding my children so I can start fresh after hitting the "Publish Post" button. But about ME, my future and my life. I'm very happy being a mother and a wife. But for many many reasons it would be a wise idea for me to get a job working with others than just my family. I'm trying to determine the best way to go and what is the right direction for me to take.

When we first learned that the twins were on the spectrum, I wanted nothing to do with it. All I wanted to do was hide and pretend that this wasn't happening. I suspect this is what many others can say when faced with this situation. It took a lot of coaxing from others to get me to come to terms with my childens' diagnosis and to make sure they received the help that they needed. Through that process I read a few books on autism and theories of potential causes, did research on the internet, and panicked. As time went on, not only did I open up (slowly and with great resistance) to the options available to us, but I became fascinated with autism in general. It's become a passion. An obsession.

So, now that I'm looking to return to having a career outside of the home, I find myself wondering what direction I need to pursue. My previous outside-the-home career was as a data manager for a pharmaceutical company. I enjoyed doing that, but I currently have no deep desire to return to that life. Autism is where my heart is now. I thought of contacting Kennedy Krieger to find out if they needed a data manager for some of their studies. But that's not the same thing. That's several steps removed from autism and the people whose lives are touched by it. In other words, it's not enough for me right now.

While taking Domino for a walk, I find myself thinking about directions my life is taking as well as where my family is heading. And an idea struck me -- what about becoming a parent advocate? And the more I think about it, the more I like this idea. I would love to help other parents going through this maze and help them to make the right decisions for their child, and hopefully help them to achieve successful outcomes. However, I still need to research exactly what becoming a parent advocate entails and determine whether this is something that's feasible. I think this is a job that I can do well.

Will it happen? Time will tell. As I said, right now I'm in the researching phase of this potential career change. My guess right now is that it will happen -- this has been something that I've been working on for a few weeks and, normally, if it was a passing thought, it would have disappeared by now. I just need to get on the ball and get organized.

Fitting In

Well, we are now about 12 days from Simon's IEP meeting, and I'm completely unprepared. I still don't know what the answers are. I still don't even know the right questions to ask. Well, that's not quite true -- I know the biggest question.....WHERE DOES SIMON BELONG?

I went to visit him at school not long ago. I actually got to spend some time in his classroom, but missed the circle time due to heavy traffic. I got to see him do an art project; watch him listen to a book being read; have a snack; and of course, talk to his teacher for a while. He seemed all right when I was there -- he was behaving as one would expect. He clearly likes doing these things and likes his teacher. But is he LEARNING anything? Or perhaps that question should be is he learning ENOUGH? Or, another perhaps, is he being challenged in ways to help him grow and develop?

Maybe that last one is the right question to be focusing on. We need to see him challenged so that his world continues to change and expand. He needs to be introduced to new experiences. He needs to be willing to follow an example so he can learn without compromising his independence.

Is MPAC the right place for this to happen? Or should he be at CAPP? (I still don't think he's ready for PEP -- not even PEP-INC). I keep finding myself thinking that we need to move him to CAPP.

But then I start thinking about why I am thinking along those lines.....is it really the best thing for him? Or is it the best thing for me? Is my desire to have the twins together interfering with determining what is in Simon's best interest? Am I unfairly comparing them again? In my defense, comparison is necessary here. Through Rachel, I'm seeing the potential of change within a short time that a child can experience, and I suspect that even more is possible. Simon has not had that level of change. And I suspect that, even if his placement was perfect, we still wouldn't see that scope of change. The question before me is whether this change is something that I SHOULD expect from Simon (meaning that we have a problem right now) or if Simon is currently working to his full potential for the moment.

So, the question again -- is MPAC the right place for him? Or should he be at CAPP? I still seem to be leaning to moving him to CAPP. But 11 months ago, we knew that was the wrong thing to do. Am I sure now that it's right?

As nervous as I was about it, preparing for Rachel's meeting was so much easier. I knew the results that we needed. I just needed to make sure that I gave them all the necessary arguments to make sure things turned out that way (as it turned out, they agreed with me so there was very little for me to do). For Simon, I'm not sure what the right answers are. Therefore, I have no way to be sure if the results of the meeting are the "right" answers.

And what if I'm wrong.......