Recognizing What Really Matters

This week has been real eye-opener. Not because of Kevin's business trip to Philadelphia. Not because of autism. Not because of the normal insanity that has become my life. Not because of anything happening directly in front of me.

It's about a small baby girl born on Tuesday afternoon in Connecticut. Her family learned several months ago that she had Trisomy-13. As a member of that family, I shared in the jubilation when the announcement came that she was breathing!!!! And I also felt the crushing blow when I got the phone call from my husband informing me that his niece wouldn't be breathing for long without a miracle.

Health is everything. Without it, we cease to be. No matter what happens, that is always at the core of anything. As difficult as the last year has been for me, I have the comfort in not having to fear for the health of my children. We may worry about the twins' well being or their ability to succeed in school and otherwise, but in the end, we know they are strong and healthy. And, given the improvements we've seen over the last year, we also believe that they will succeed in life.

So, now I've been given this reminder, in a very harsh way. I hope I can always cherish the moments I have with my children while they're still young enough to allow me those moments, and always to embrace the gift that is their good health. My thoughts and prayers go out to anyone who cannot say the same.

Bring on the snow!!!!

Actually, that's not true -- STOP THE SNOW!!!!!!! In the last week, we have gotten nearly 4 feet of snow, and we live in MARYLAND!!!!!! I grew up in New York; I went to school in New England and spent about 2.75 years living in Pittsburgh, PA. I have NEVER seen as much snow as we've gotten between last Friday and this past Wednesday. Schools were closed all week starting with an early dismissal on the previous Friday and a snow day for a small flurry the previous Wednesday. All of my kids will be going to school into JULY -- and that's before they start with ESY (Extended School Year).

We are going CRAZY here. I know -- it isn't a very long trip. As children on the spectrum, we need to have a routine. This week, that routine has gone out the window. It feels like we've spent almost the entire time inside with the television on (pulled out every movie I could find that was appropriate) reading the same books over and over again and solving the same puzzles over and over again. The saving grace of having the kids home all week was Kevin was also home for much of it as the federal government had shut down (except for essential on-site personnel). Even though he spent a fair amount of time shoveling or working from home, he was HERE to relieve me when the need was there.

We did make an attempt to go out into the snow and let the kids play outside. We'll just call it a small disaster. I bought "rain boots" for Daniel last week in preparation for this week (we knew what was coming and for a change the meteorologists got it right) -- I went to Target and they no longer had ANYTHING for winter-wear (but these boots were lined and the right size so I figured it was good enough). Well, the snow was so thick and packed easily that it pulled his boot right off of his foot. Then it did the same thing with the other one. We managed to uncover one of them. The other boot, well, perhaps we'll find it in time for his 5th birthday in April. But it made him really upset and he was really cold and couldn't wait to get inside.

Rachel lost it when I put her in her snow suit -- I managed to get her outside, but she just kind of stood by the door crying and not quite sure what to do. Now, I have to admit, I can't blame her. She's a 39" little girl and there was 29.5 inches of snow that had fallen within the previous 48 hours.

Simon had a good time -- he managed to fall in the snow and was so shocked and bewildered that he forgot to be upset about it all. That's really funny in most respects because he's the one that can't handle change and has more sensory issues when dealing with unfamiliar textures and experiences (the first time he was given PlayDoh, he nearly vomited at the mere touch of it only about 9 months ago).

And, to make it even crazier, we have a long weekend this week for President's Day but on Monday they are predicting more snow -- now this one shouldn't be much, but right now there's NO WHERE TO PUT THE SNOW -- at this moment, I truly believe that, if a single flake falls, the area will just shut down.

So, to paraphrase a nursery rhyme, "Snow Snow Go Away; Don't Come Back Another Day"!!!!!

It's Taken A While....

....but we finally got the results of the genetic testing on both Rachel and Simon. No surprises. Everything was either "Negative" or "Normal". For each of them, KKI had tested Karyotype, Fragile X and Array CGH. So, now we have those answers. Or maybe we just have more questions.

I'm not sure why I'm reacting this way. It was predicted by most (if not all) that these tests would come back "normal" since Rachel and Simon don't show any signs of other conditions that can simulate the appearance of autism (like Fragile X). But, being twins, I think I was expecting to learn of a genetic link between their DNA and autism.

There are many positives to this -- far more than negatives. But it does bring up the questions of nature and nurture once again. If there is no apparent genetic pre-disposition for either of them to develop autism, what in their environment affected their development enough to put them on the spectrum (that didn't affect Daniel)? Was it the 6-MP during pregnancy? Was it Remicade for the dose and a half I received while I was nursing? Does it have something to do with Crohns that isn't covered by those other 2 questions? Was it something to do with the fact that they were 6 weeks premature? Was it something that I did? Or did it simply just happen and there's nothing that could have been done to avoid it? And, going back to the nature side, is there actually a genetic pre-disposition that they both share that the specialists just don't know to test for (but that's kind of the point of ascertaining the Karyotype and Array CGH)?

I'm not blaming myself or anyone else in my family, so when reading this, please don't think that. But, as an epidemiologist, I want to understand this. That's very hard to do when I don't think anyone does. But, the most important thing here is that now I don't have to worry about some of the other symptoms of conditions like Fragile X.

Hopefully, we will continue to see them develop and grow and maybe someday, everyone will be surprised to learn that they are autistic. That is always the goal.

I think we finally have a fully happy transition...

...the one wrinkle we've been facing was the bus situation. Well, Rachel didn't have school on Monday or Tuesday while the staff underwent training, so we weren't going to see the effects of the many conversations with the transportation department until Wednesday. On Wednesday morning, (in theory) the supervisor was also on the bus. That day, the bus arrived just before 8 (maybe 7:57) and arrived at school at 8:45. Also, there was a note in her notebook that one child (from Rachel's class) wasn't going to be on her bus any longer and so it was expected that Rachel would be arriving even earlier. Sure enough, on Thursday, she was picked up at 8:00 (on the nose) and arrived at school at 8:35. That means that her bus ride time had been cut in HALF. We'll just say that I'm really happy about it and my faith in being a royal pain in the you-know-what can pay off sometimes. I'm told that she's doing really well in school as well. I'll be going to observe her next week which will be (hopefully) fun for me, allowing me to see how well she is really doing with everything.

The rest of the family has also been doing really well. Simon came home with a note from his teachers stating how well he's labeling things and how much he is participating in circle time and other activities. It's so nice to hear how well he has made the adjustment to this new school. This is especially true for Simon who, even though I haven't talked about it quite as much, I had a lot of concerns about because, unlike with Rachel, whom we've learned responds so well to the ABA techniques, we really hadn't seen how Simon learns. MPAC seems to be a good place for kids who just don't fit in the CAPP model or any of the PEP models. This worries me though, if MPAC is no longer going to be supported by MCPS. I really don't think he's ready for PEP, I know that CAPP is a BAD choice for him and I'm not sure what else there really is. I know.....MPAC is not TRULY going away (according to people who are within MCPS) but will be "incorporated" into the public school setting (by creating another program). I didn't see this process for CAPP (although I know this is what happened) -- but I may be in that situation for MPAC, and I'm not sure what to think of it all. I just hope it doesn't happen any time soon, or Simon may suffer for the change.

Even Daniel had a good week this week. It was a short one for him as well (4 days instead of 5) and he had a playdate earlier this week. And it was a chance for me to actually just LET the kids play, without 100% supervision. Overall, it went well and both boys seemed to have a good time. I hope that he wants to come over again soon and that others will follow his lead.

So, it may have taken a few weeks, but I think we're finally there and going on with our new lives. Simon will be going back to KKI for a Speech and Language consult late next week and perhaps we'll learn some new ideas to help him. Rachel's visit was quite informative for me (mainly because she was so cooperative) and I hope we'll have that again this time. And, as I mentioned earlier, I'll be going to observe Rachel in her class on Friday, so I can see how well she is really doing with everything and how well she is fitting in with her new surroundings.

I'd call this a good week!

The Bus Saga....

When I first joined the Wednesday parent group with Infants and Toddlers, the parent educator (who leads the group) talked about how a reservation a lot of parents have when the children leave their program is "The Bus". I always assumed that it's hard for parents to put a just-turned-3-year-old child on the bus to take them to and from school. That wasn't going to bother me (at least not enough to not want to do it). But now I'm thinking that it's the added layer of bureaucracy.

Let's start by saying that Simon's transportation is just fine. His school starts at 9 and the bus picks him up just shy of 8:30. He gets on happily, gets to school just fine and on time, and comes home happy as can be somewhere around 2:20 (school lets out at 2). It's reasonable and he's happy with the whole arrangement. But things can never be that simple when you have twins.

Rachel's bus arrives at 7:40. Her school doesn't begin until 8:50. Yes, that's 70 minutes (scheduled) on the bus. She just turned 3!!!!! This is totally unreasonable. I decided to wait and see how things were going before making a stink about it. But had been over a week and the time had come.

I contacted the school's autism office a couple of days ago to ask what would be the best way to proceed (ideally looking for a name within the transportation office so I wasn't being shuffled from one desk to another). They told me they would look into it. And what they learned (and passed onto me) was that there was only 1 other child on the bus (picked up after Rachel) and the reason it took so long was "traffic".

My response to the autism office after reading this that was, let's just say, a bit irate, claiming that if it only took 30 minutes to get Simon to school (and his school is only a mile away from her school in that same direction) with 2 stops following his own pick-up, they should be able to get Rachel to school within 40 minutes.

Now, I'll admit -- traffic in Montgomery County is a problem, especially during morning or evening rush hours (which is why Kevin goes to work so early in the morning). But the school is only 20 minutes away (typically) and expected traffic can be accounted for, so why is it taking so long to get a 3-year-old to school? Time to call the transportation office myself.

Well, this morning I did just that. What they told me didn't match AT ALL what the autism office had passed on to me (I am assuming that the transportation groups made a change after the conversations with the autism office). She is now the 2nd of 6 children picked up by this bus and is NOT to be picked up prior to 7:57 (which is when I was initially told that she would be picked up for school). If the bus arrived earlier than that, I wouldn't have to put her on the bus until that time. Then the bus makes its remaining stops and is scheduled to arrive at her school at 8:40. Approximately a 40 minute bus ride is (relatively) acceptable (double driving time was my expected rule). After getting off the phone, I sent an email to the autism office telling them what I had learned.

About an hour after sending my email following my call to the transportation office, the autism office sent one back to me telling me that she would talk to the transportation office about having Rachel ride on the bus with Simon and then the bus would drop her off before heading to MPAC (or maybe after). Now, on many fronts, this would be IDEAL!!!! But I know that this isn't going to work. And right now we have a feasible solution. Why didn't she read the rest of her emails in the thread before sending that? GGGGRRRRRRR........

Rachel doesn't have school on Monday or Tuesday due to in-service days, so it'll be Wednesday before we know what's actually happening. But I hope that we have a good solution here and that I don't have to resort to driving her to school (when I have to wait for Simon's bus and drive Daniel to preschool, not to mention the fact that she LIKES going on the bus) or ask about the possibility of changing her placement (when she's doing so well in her new classroom [this was a less-preferable suggestion from someone I know and trust]).

If this is solved, the "transition" should be over and we can get on with our lives.....

Adjusting to a new life...

....well, the twins have been in their new programs for a week. One week of putting them on their respective buses. One week of having them working on getting them to say "Bye Bye" as they're leaving. One week of sending and/or receiving daily notes to teachers. One week without naps. And, overall, I've got to say, it's been a good week.

Rachel and Simon both seemed to have made this adjustment quite well. By the 3rd day, they were both excited when they saw the bus. Simon and I tend to walk out the door as the bus is coming down the street, and he has to stand on the stoop and watch it pull up in front of the house and he does his "happy dance" from the moment we see it until it stops to pick him up. And they come home happy. That, more than anything else, tells me that they are enjoying themselves. Rachel has taken naps on her LONG ride home from school most days. Simon has now completely dropped the nap. And they are both actually SLEEPING at night -- they're falling asleep within 20 minutes and (seemingly) sleeping through the night. And I'm enjoying a little bit more freedom -- and for the little things; taking a morning shower after dropping Daniel off at nursery school; going to the grocery store without worrying about little hands pulling everything off the shelves; and just having a chance to breathe for a little while.

There is one crimp in this whole arrangement; Rachel's bus ride. She is enjoying it, so I have to be careful how I handle it. But the county's policy is that the children are allowed to be on the bus for up to one hour (yes, 60 minutes) each direction to and from school. Without informing me, they changed her pick-up time in the morning from 7:57 to 7:40 and she is consistently not getting to school until 8:45 (with a couple of minutes either side), per reports by her teacher (we've been tracking it since the first day since I thought her commute was too long). It only takes 20 minutes to drive from here to her school. I've now contacted the school's autism office to ask how I should best handle this before going off the handle with the transportation office. The problem is, since all 3 of my kids go to different schools, I need the bus to take her and Simon to school so I can drive Daniel (since I don't have a bus option for him). I can't even follow the bus because I have the 2 boys at home (waiting for their transportation to school). But I'm certain that this too shall work out.

So, it's been a really good week!

Happy Birthday!!!!

Well, today was the day. The day we've been waiting for. Rachel's and Simon's birthday. Their first day of school. Watching them get on the bus. And now it's done.

The last week has been, to put it mildly, CRAZY!!!!! Because of the snow prior to the holiday break, all of my plans to visit the schools and get comfortable with everything were just out the window. We had this past week to get everything done and to get comfortable. That included visiting both of the schools and allowing the two of them to get familiar with their new classrooms. It also included getting all of the paperwork together and dealing with my own reservations about everything. And, of course, there's a 2 hour delay on the day when we were planning on visiting CAPP for Rachel which delayed her visit (and then she developed a fever delaying the visit even further).

But this morning, we came downstairs and got breakfast for the kids and treated it just like every other day. Then, at 7:47, I hear a horn honking and realize that Rachel's bus is here -- 10 MINUTES EARLY!!!!! She doesn't have her socks or shoes on yet. She doesn't have her coat on. She is still eating breakfast. I run outside and inform the bus driver that we'll be ready very soon, get her ready, and take her outside. She sees the bus and doesn't want to go ANYWHERE. The bus driver and bus aide was nice enough to allow me to bring her on the bus and get her in the seat myself rather than having a stranger strap her into a carseat (which is something she's not very cooperative with in our own car). But she was screaming and watching the bus go was very difficult. But she was off. One down, one to go.

Simon's departure was a little smoother -- mainly because the bus was there on time (or maybe a couple of minutes late). By the time the bus got there, we were ready. He was dressed and had his backpack on. But, again, he didn't want to get onto the bus. Once again, the bus driver and aide were kind enough to bring him onto the bus and sit with him while the harness was attached. Then I said goodbye and left the bus and waved as the bus took him to MPAC.

Throughout the day, I received (and made) phone calls to check on them, and they both seemed to have a really good day. Not too many expectations were being placed on them this week -- right now, it's more important that they get comfortable. But they seem to definitely be on the way to having that happen. Simon had fun playing with the toys in the room. Rachel got to experience an "art" special. It's definitely a good start.

The return trip was also successful. Simon returned home just shy of 2:30 this afternoon. He got off the bus with minimal issues. And then he got to go downstairs and play for a while before snack. The only problem with this schedule -- NO NAP. Rachel arrived home just shy of 4:00. She HAD fallen asleep on the bus and didn't appreciate being awoken by the bus aide. So, it took her until nearly 5:00 until she was no longer crabby. But then, she was right back to herself.

So, Day 1 of many is now behind us. Hopefully, the following days will go as smoothly.